May 132004

This took me a while to catch as a symptom because it is one of the rare MS symptoms that I didn’t pay much attention to. I have had itching within the last year with no known cause and never thought much of it. It is with this latest exacerbation that it got pretty serious and was very frequent – the frequency finally made me look it up. The itching for me is very topical and when I do scratch it does feel better until I stop and then it just starts itching again. For the most part the itching hasn’t been all that bad and even on the worst days comes and goes. It is also on the underside of my right arm and my elbow so it is very easy to deal with. I tried taking 600mg of Ibuprofen to see if it would help – plus I was having arm pain at the time – and I want to say it helped. Unfortunately due to the nature of the itching it may have just gone away on its own. Since it does come and go I haven’t tried treating it again because I wouldn’t be able to tell if it helped or if it just went away. This is the 3rd rare MS symptom I’ve had – the other was hearing that I mentioned before – can you guess the other before I post about it??? I find it pretty bizarre that I have 3 rare MS symptoms.

(This has been a very popular topic.  To view older comments you will need to scroll to the bottom of the page and select “Older Comments”.  Good Luck!)

  169 Responses to “MS Itching”

  1. Hi Erik,
    I was diagnosed with ‘probable MS” 2 years ago after a very bad case of optic neuritis which was treated with intravenous steroids. Lately, I have been having itching with no known cause, no visible skin irritation. This prompted me to do some online research, and I came across your blog. Like you, I am having itching on the underside of my right arm and my elbow, but no pain is present – only the deep sensation of itching. It is beginning to subside now, after about 3 weeks.

  2. I’ve really wondered about this itching symptom of MS and your comments have been a help. It began on top of my right arm. That went away a year ago. Recently the itching was so bad on my scalp that I was losing my hair from scratching. That went away only to have the itching all over my face. There have been no visible rashes etc. Right now “the itch” seems to have gone. What weird symptom next. Your site has been a help to me. Thanks.

  3. Hi Erik,

    I have the itching problem also, but have sctrached enough to cause scabs. Also, I get big welts where I have scratched. They occur after scratching anf sre not there before hand

  4. Hi Erik
    I was told I had possible MS after a decent dose of optic neuritis in January. Have had a myriad of symptoms since one of which being the itching. I have had bouts on a patch just above my hip and I get it on my face. I imagine it is like being infested with fleas. It comes and goes adn drives me insane.There doesn’t seem to be any correlation with anything else so seems realy odd. Also get what I call old lady bruising if I scratch an area too much. I blame this on IV methylprednisone in huge doses given for the optic neuritis. anyhow just thought i would share.


  5. Anonymous,
    I really dislike the “possible MS” diagnosis. I think neurologists like to hand out the MS diagnosis far too frequently when there are other things that can cause the same problem. Maybe you’d want to check into the Diagnosing Lyme post. Lyme could also explain the symptoms and is something neuros test for badly.

  6. I have had itching on the main tendon area on the bottom of my right foot for 18 months now and itching on my calves, and outside of my thighs off and on. I am currently in a medical study that I can not take my usual cocktail that makes these symptoms subside. But what worked for me is a muscle relaxer that I would take at bed and Nuerotin. Maybe talk to your docs as this has helped me and also my mother who has MS too and this helped her. The itching can drive you insane!

    • Hi I have not been diagnose yet but I have a lot of symptoms I can seem to find the right dr .i have had numbness in arms and legs I have eye problems and also stiffness of hands and feet
      . A couple of time my right eye went blind for a few minutes they said it was a T.I.A .im so trier of dr but what can I do

  7. To all of those with the itching;
    I was diagnosed with MS two years ago and shortly after starting Copaxone, I begin itching like crazy. The undersides of my arms, legs here and there, my neck, sometimes my head. Occasionally if something out of the ordinary touches my skin, I get tiny hives. My doctor has been treating me with Zyrtec because they can’t find a cause. Benadryl helps also, but it stinks- taking an allergy medication everyday without really knowing why.

  8. hi, ughhh! the itching travels my face, neck, feet, legs ,back – next to pain this is my most intolerant symptom. i have thrown out clothes, shoes, detergent, shampoo, sheets, comforters, pillows – taken hydrocortisone, prednisone, zyrtec, benedryl. use of pills, sprays, treated bath water, ICE packs or injections of various types have NOT helped. its especially annoying when it hits across my breasts in public. cant get away with scratching just to announce a simple “excuse me” can i?

  9. I have MS and lately I itch on my legs, head, arms everywhere from time to time until I think I would go crazy… then it is sore and burns as I have itch it raw. I seems to come on in the evening. I have been putting on a anti itching cream during the day and if it is really getting bad a bed time I take a nerve pill and it calms me done and it goes away. I have an another appt with my Nero Spec but they just don’t know and will probably tell me to take more nerontin…. I take 1600 mg already for the burning pain around my mid section…… But try a nerve pill as that is the only thing that really seems to help me…… Jeanie – Ohio

    • Hi, when bad, my itch is mind boggling. Neurontin did not work for me. What nerve pill was successful for you? Thank you so much.

  10. I came across your post after doing a google search on MS + itching! I’ve been awakened at night with an intense itching on the palms of my hands and inbetween my fingers.

    That is a weird symptom for sure. And scratching does not really work on ones palms and the soles of ones feet (which I’ve experienced often.. mostly rubbing my itchy feet upon my husbands feet)

    It has only happened at night.

    I am not on DMT

    Diagnosed in 2003

  11. I too have MS. For me the only temporary relief I have found after over 10 years of dealing with this is hot water. Just apply very warm water, Not Scalding water, just Hot. Easy to apply by a shower or bath. In cases where a shower or bath is not convenient, just a wet cloth fresh out of a microwave oven. Of Course Not too hot, a microwaved wet towel can Scald too.
    It is nice not to have to take medication for iching. I hope this post can help someone.
    PS: Betaseron is a great treatment, I had taken Copaxone a long time ago, and after a year of painfull Copaxone shots my doctor told me that Copaxone was shown to be an ineffective treatment. I have been on Betaseron ever since.

  12. Hi there i have ms .I was woundering if u can feel the skin that’s itching ,because i have a patch under my shoulder on my back and every night for a year now it play’s up .When i scrath it get’s rid for a few min’s .But i can’t feel the skin i’m scratching ????? Anyone else have that ?

  13. I am a 28 year old female and I was diagnosed with MS in Nov. 2008. My very first sympton of MS was tingling in my entire body for about 2 months straight. I started Avonex for my treatment in Jan. 2009.
    I now have a terrible itching sensation with no rash and no bumps. I have been itching for 2 weeks now right after a week of being on ivy and oral steroids.
    It has been driving me CRAZY! I have black and blue marks from itching and I cannot stop.
    Benadryl helps, but made me very drowsy (especially during work). I have been covering myself with Cortizone, but that only helps for a minimum of 10 mins.
    I am going to see my neurologist tomorrow about this and if I have any answers to how to stop this itching, I will post back.

    Hang in there everyone, we all can get through this!!

    • Thank you for your kind words of strength. Just started with my latest flare up in years. Your words give me hope cuz my itching only came after my flare up.. I’ll continue like many others to overcome.. thanks for your kind words

  14. hi everyone, i am 23 from montreal, canada

    i have not been diagnosed with anything, but have recently (the last month and a week) spotted bruising on my thighs that has no apparent cause…i thought it was a little odd…and then i started to have intense itching on my legs for no reason! i was convinced i had body lice or bed bugs or somehting, but i can't find any bite marks…and then last week, my arms and legs would not stop tingling, and i felt like i was slowly losing sensation for four days…i got to see some neurologists about it in emergency, but they couldn't figure out what was wrong…
    this last month i have really started to feel like a hypochondriac, because i have seen the doctor so much- but none of this has ever happened to me, and i am constantly doubting whether or not the symptoms are real because (aside from the bruising) none of them are visible!

    i would REALLY appreciate advice on what to do/what this could be…i don't really know what to say to my doctors to effectively communicate my concern


  15. Can anyone tell me if they experienced severe headaches when they stated copaxone, and if so how long did they last. I had to go off of copaxone because of the severe neck and head pain.

  16. hi everyone,
    the top of my elbow has been itching for over a month now. its only my elbow and it mostly itches at night. during the day it comes and goes at least 3 times a day and it will itch constantly for about 2o minutes. i have basically itched myself raw. i have scabs on my elbow from this. i went to the doctor they gave me a cream called triamcinolone acetonide cream, unfortunatley it did not help. there is no rash, no nothing, and it will not go away. i do not know what it is, and when i mention it to my mom or anyone they think its dumb, but it has become a huge problem to me. i even wake up at night scratching it constantly. it sucks 🙁

  17. I am 40 years old, just came across this blog when I searched intense itching on arms. I haven’t been diagnosed with anything yet, but the itching I have been experiencing on my shoulders (mainly at night, but during the day a little) is absolutely driving me out of my mind. There is no rash, I have seen a dermatologist, tried antihistamines that haven’t really helped, creams that help for a few minutes, went to acupunture (once so far but I’ll go back). I called my neurologist today, his nurse said it sounds neuro but of course he doesn’t know unless he sees me. I just need answers. Maybe it is MS I have no other symptoms, but this is not just regular itching, something is going on. Any thoughts??

  18. i have the shoulder itch also, and it comes on at night i have had it on and off for a couple of years it lasts for a few weeks and goes away, well its back,no bump, no rash, nothing. its driving me insane. this last time it started on my arm by my wrist and eventually ended up at my left shoulder. nothing helps.

  19. I’m a 30 year old diagnosed with MS in 2003 and can totally relate to all your posts! When I was first diagnosed I had a bout of severe night itching on my neck and head (scalp) and my Neuro gave me Tegratol. Not sure if it just knocked me out enough to sleep or actually reduced the itching, but it helped! I’m now just having another bout (1 week so far), but this time it’s random on most of my upper body and is driving me crazy! I loathe taking meds but I think I might have to go back and get Tegratol again.

  20. Hello All:

    I have not been diagnosised with anything as of yet. My drama started about 18 mons ago.

    I lost vision in my left eye for under 10 min. I was sent to the ER and admitted to the hospital. I was evlauated for a stroke. All test including two MRIs were normal.

    Since that time I have been experiencing the following symptoms:
    Muscle spasms
    visual disturbances
    tingling, numbness, in legs and arms (all the time)
    sensation of water running down legs
    cold, freezing feet
    unexpected blurred vision
    outrageous scalp itchy
    pain, pins and needle feeling on the bottom of feet in the mornings

    I have a neurologist. He does not suspect MS. All test are normal. Did any of you have trouble getting diagnosis with MS? How long did it take?

    • So can relate in that before I was diagnosed, no form of testing gave us the answers to what was wrong.. the final test done which was a spinal tap, definitely gave my diagnosis MS.
      Hope this delivers a different outcome but serves helpful in any way.

  21. Hi Lavon

    I’ just want to ask have you been diagnosed yet as that is so similar to me?
    In August I lost the sight in my left eye for 10/15 mins, went to A & E, saw opthmologist and after many tests he diagnosed optic neuritis. Nerologist is sending me for mri as he thinks could be TIA/ Stroke. But like you taking months to get any answer but recently my hands began to itch with pins and needles. No rash but lasting days. Have been going dizzy, numbness in hands. Restless legs. visual disturbances.
    Have you had any answers yet, hope you can get back to me as like you really want some answers.

  22. I finally had to go for a third opinion at an MS specialist. Doctors would not diagnose me even though I had many lesions in my head, spinal tap was positive, and low vitamine D which pointed to MS. I had severe muscle pains, tingling, can hardly walk, and hold things. Every possible auto immune disorder was tested and came out negative. Until my new Doctor received the reports from the spinal tap she ordered a VEP but canceled it after she received results of the tap. There are many ways to test for MS so do not give up. Go for second and third opinions if you able to. Do not give up even if the symptoms go away. My symptoms went away for 13 years and doctors thought it was just severe arthritis bakc then. Symptoms appeared again but this time with severe disabling symptoms.I was finally diagnosed in 2009.

    I have severe itching at night. I do not look forward to a good nights sleep. I scratch and leave marks on my arms. The palm of my hand and in between fingers itch horribly. I am on copaxon and will call my MS doctor tomorrow.

    Please lets keep supporting each other.

    Best wishes to everybody for a Happy and Healthier new year!

  23. Linda, I find it interesting that you had trouble getting a MS diagnosis. I do not hear much of that; usually the opposite.

    As I recall my itching felt very deep. I remember slight compression worked well for pain maybe that will help with the itching (i.e. a sock).

  24. Hi all,
    i can recall having itchy arms and neck going back over 14 years ago. I am now 40. I had always put it down to some sort of stress level i get to at that present time. The only problem there was i am not a very stressed kind of person.
    But after being suffering optic neuritis since early april i have finally been diagnosed with MS. I say finally cause after not knowing what, knowing is a hell of a lot better..
    These ichy spells that come and go, well the only thing that helps me is a compression bandage around the area. Not to tight though, just enough to stop you scratching your skin off. The symptom will pass if you can stop the contact i found.
    Have a safe new year
    Kind regards

  25. Hello all,

    I’m a 41 yr old female and i’ve had MS since 2001. after reading some of these posts i feel a little bit better about the itching that i’ve been experiencing. i have really bad itching spots on my hands, left eye all around my mouth and a big red circle on my left foot. now i can go to my dr.’s and see what can be done about this. I have been taking benedryl but that only takes some of the itching away and because it on my hands i can’t really grab things or make a fist. Thanks to everyone for ur stories it has helped me a bunch.

    Hope everyone has a happy and itch-free new year!!

  26. Hi. I am so relieved I have found this site. I am 35 and been diagnosed with ms based on symptoms, MRI lesions and neurological examination even though my spinal tap test was negative! As a result of this last point I am still clinging onto hope that diagnosis is wrong! I typed in itchy skin no rash into google and found this site. I have had itching on inside of legs, feet, scalp and sometimes arms. I haves scratched so much I gave left red marks. There is no lumps, rash or anything but the itching is so intense I have to scratch! I also get an itchiness of the scalp which is a slightly different sensation as it feels like I have things crawling in my hair – I can’t tell u how many times I have checked for lice!!! I am so glad u found this site as I really didn’t know there was an ms itch. now that I know I am not crawling with mites I will try not to stress about it. Also this mostly occurs at night in the legs and feet is there a rwasin why? Scalp itching is in day time usually!

  27. Ugghhh. I was dxed in 2007 by a fantastic doctor. I have had MS for 25 years and was so relieved to finally have a dx. I have been having my current relapse for 3 weeks. Numbness, tingling, drop foot, pins & needles all from the waist down. I went to a new neurologist because my other one moved out of state. The new dr. wants to do all the MS tests over again which pisses me off to no end. She was rude, she cut me off when trying to tell her my symptoms, She only wanted to hear about the neurological symptoms, not the panic/anxiety attacks, severe depression, itching so bad I feel like my skin is crawling. When I told her my other neuro had dxed me in 2007 she said that she wanted to dx me. She wants to do all the tests over again. I have insurance , but still can’t afford to pay for a battery of tests because she needs her ego fed. Then she asked why I wasn’t on any of the MS drugs and i told her my proir neuro suggested we wait & see if i have another relapse & then talk about it. I was trying to tell her about LDN & she cut me off saying she doesn’t deal with pain management at all. I told her LDN is used to get people off opiates but . . . then she repeated herself, looking at me like I was some kind of addict. Finally I got pissed and told her, “Look, you’re not listening to me. There have been trials on LDN for MS patients and they have seen signifigant results. I don’t think you were hearing me.” She said I was right that she wasn’t listening. I live in a small town and good docs are hard to come by. I am just waiting for this relapse to subside because i am sick 7 tired of the medical system. The itching is getting out of hand but I have been taking d-3 and it seems to help with the relapse. Anyway. I just needed to vent. Sometimes the frustration gets to you more than the dx.

    • Hi Deb, I was doing some research and came across your comment. I would find another Neurologist. They are getting paid to take care of you! I’m thinking she doesn’t know how to read your chart. I moved and had to get a new doctor. All my medical info was sent to him and I had two of my MRI x-rays with me. He had already reviewed my charts and he looked at my x-rays and made a diagnosis. My other doctor just told me after all tests and lumbar puncture that I had MS. And started a treatment. My new doctor said I have Progressive MS. At least now I know what I’m working with. It’s bad enough trying to stay positive and upbeat without having a negative doctor who doesn’t act like they are on you side. My first doctor was top in our are but had no bedside manner. My family doctor was the one who recommended him because he was the best, so when I felt unsure about something I would talk to him when I had my 6 month appointment. Please don’t be afraid to interview doctors before picking one.

  28. I have been dxed with “probable MS” since ’97. I was on Avonex 10 yrs., Tysabri 1 yr., and am on Copaxone for the past year. I get severe itching of the scalp and back only when I lay down at nite. You’re right…it makes you CRAZY!!! I don’t know what to do. No problems if I’m up or during the day, but I get so tired. Do you think it could be the Copaxone?

  29. Holy smoke ! — I thought I was the only one with the itching symptom. When I mentioned it to my neurologist he didn’t seem to be aware of it as an MS symptom and brushed it off as unimportant. My itching takes the form of SEVERE itching which comes on suddenly, either on the top of my hand or foot. It is always concentrated in one spot and I scratch until it is raw. The last one on my hand, the itching was so severe that I thought I must have unknowingly spilled some cleaning solution or chemical on my hand. It’s just a relief to know that this is indeed a symptom and I am not the only one experiencing it.

  30. HELP ME!!! I just turned 35 and have three kids 13,10,8 and all of a sudden pins needles numbness head itchy skin crawling now for two months!! UGH !! My primary md was quick to drug me up with klodapin wth??? I am not crazy all blood lab work was normal off to see neuro any suggestions to make him listen to me!! If I possibly have ms the quicker to start treatment the bettter am I right or just scared????

  31. Carrie,
    You definitely need to see a neurologist. Many neurological conditions can cause pins and needles; the dimpliest probably being a pinched nerve. Definitely go see a good neurologist and do not assume the worst until there is reason to.

    I hope you find the cause soon. I agree I dislike the attitude of prescribing antidepressants when you have a valid complaint..

  32. I was recently diagnosed with MS about a year ago. I am currently taking Avonex. I get these little rashes that itch really bad. Sometimes I scratch so much it starts to hurt. They sometimes starts to look like little burn marks on my elbows, hips, legs and hands. Is there anything to take for this to make it go away?

  33. It sounds like what you are experiencing is not MS or injection related (I guess it could be a side effect, but it seems unlikely). If the problem comes and goes take some pictures. You should definitely talk to your neurologist about the rashes.

  34. Back in April I had an MRI done and found that I had several lesions on my frontal lobe. The test was only done after I complained of my CONSTANT facial twitching and pain. The neurologist said that it could be MS. Since then Ive been paying attention to my body. I’ve had numbness on my hands and legs/feet when I go to bed. I have also been experiencing itching on my scalp and breasts and legs. I try not to scratch as much but to pat the itching area, otherwise I am very sore after it subsides. I also have had bad headaches and neck aches. I have had spells of dizziness and imbalance.
    My neurologist told me that he could do a spinal tap but its only 30% effective. I spoke with someone else who had similar symptoms as me and she has had 3 spinal taps and could not find anything wrong with her.
    I am going to get a second opinion from a neurologist who specializes in MS.
    Wish me luck.

  35. Dr. Ben Thrower at the Shepherd Center in Atlanta is the best. Google him and you will be able to get all kinds of info about him. He is awesome.

  36. I was dx in early 2008. I also have endometriosis and interstitial cystitis which is a problem with my bladder. I was on Atarax for the IC which also helped the itching that I didn’t realize I had until I stopped taking it.

    I now take benedryl if I have the itching. It’s much worse in the evening most of the time. My hands, feet, arms, and head are most affected. I too will scratch till I am raw or bleeding. I try not to let that happen!

  37. Hi. I’m a 31 year old female. My symptoms started 11 years ago. My symptoms first started out with severe itching all over my body. It felt like something was crawling all over me. My my head to my feet. I also first noticed a small numb patch on mu left thigh. 11 Years later still not diagnosed. I have seen 6 Neurologist.. have every blood test a human could possibly have known to man, Heavy Metal Screen, Biopsies, EEG, MRI, Lumbar Puncture, Colonoscopy you name is have had done. Finally May of this year I started having severe Vertigo, Fatigue, Severe Heachaches that start in the back of my neck and have severe facial burning sensations. I also experience waekness and numbess in my left leg… not to mention that litte numb patch on my left thigh has spread to over half of my body. total severe numbness..feet, legs, trunk, hands, throat and the middle of my back. Most recent Brain MRI showed a couple of Lesions. Finally 11 years later I might have MS. It is such a ugly, mean, tricky disease. I’m so sorry so many like myself have to live with these weird unexplained sensations all over. Best of Luck to each of you.

  38. Lindsay,
    I do not understand why it took so long to get a diagnosis. By your explanation and following the McDonald criteria you should have had a diagnosis years ago.

  39. Hi I too have maddening itching all over my back
    And legs, I feel like I am going insane, my neuro
    Also did not want to diagnose ms even though I
    Have multiple lesions in my brain and the beginning
    Of lesion formation on my spine by d11 and 12,
    I at the moment have nothing to stop this itch
    And it makes me go crazy, I am glad to hear
    I am not alone, both my normal gp and specilist are
    Convinced I have ms, just the neuro sais its not
    Possible as there is no hand shaped formation of
    The lesions, is he right?

  40. I also have a variety of other ms symptoms like
    Tremors, double vision, memory probs, pins and
    Needles, electric shock sensations in my hands,
    Restless leg syndrome and heat intolerance

  41. I also have other symptoms like tremors, electric
    Shock sensations in my hands, double vision,
    Restless leg syndrome, vertigo, tinnitus, memory
    Problems, heat intolerance, spasma and the list
    Goes on. Please help!

  42. Thanks for this article/blog. I’ve been itching for a few weeks, it started in my arm but I think that it was from being in the sun. However, I have had itching on the underside of my arm as well and it has gone to my lower back all the way down to the back of my thighs. I’m thinking of going back on the Predinsone, which i hate taking but I can’t take this itching for much longer. Thanks again for your blog.

  43. Hi all, I have had body wide itchiness for about 10 years, and and am only recently dx with MS. I also didn’t know that itching was MS related, but it is horrible, spreads to different areas on my body and is relentless. My itching happens most days, but not until the early evening/bedtime (it’s so great to get into bed and start uncontrollably scratching everywhere!).

    At first I took Benadryl at night thinking it was an allergic reaction. Now, 10 years of itching later, I know that it has to be neurological. It feels like something crawling around, brutal!
    But the Benadryl really knocked me out, so then I started taking different brands of allergy meds/antihistamines. Some worked ok but not as well as Benadryl so I was always passing out early at night.

    I have found one that works really well, Aerius, which is the only allergy med that takes the itching away without knocking me out. I usually take it every day, but try to skip some days. It’s weird cause I will skip a few days of it and each day I get a little itchier at night to the point that after 3 days of not taking it I have to take one.
    Anyway, Aerius it is, oh and the generic form is desloratidine (not loratadine which is Claritin). So if your pharmacy carries their own generic brand like mine does you can save some money.

    Happy itching y’all, Natasha

  44. I hate the “possible MS” diagnosis” too. I have had it since 2006 when I had the flu very bad, then Vertigo for about a year, couldn’t, walk by myself went to many, many doctors, no one was sure. About 9 months ago I started this insane itching all over my body, makes me want to throw all my furniture out the window and scream. Friday I found out that I had low B12 in my blood. I am on shots now and will be for a while, if this helps I will be sure to let you itchy people know, this is almost as bad as some of the other MS symptoms.

  45. This is new to me…father and brother have had or have MS…I’m just starting the dx process…going for EMG next week then we’ll tkae it from there…nice to have someone to talk to

  46. I am going through the diagnose part of this awful journey. I am 35 and lost my sight for a few minutes 6mths ago in my right eye. Sent to the ER and found I had pressure behind my eye. Few months later I had pain behind my eye and found it was optic neuritis. I had an MRi done and they found abnormalties in my brain, but not a typical place for ms to begin, they say. I have had itching that has drove me insane for a month now. I get it all over my body. I feel weird before it begins, starts off with small area and goes up and down my body. I turn bright red, welts, little bumps, and feel like I am going mad. I have tried everything, cortisone, sprays, oatmeal baths, and benadryl. I take 5-7 benadryl a day, still doesn’t work. Now they have given me hydroxyine and that isn’t working. It is so much worse at night, to the point that I am itching and crying in the bathtub. I am feeling off balance, bumping into walls, messing up words or phrases. My right hand is numb and tingling, and have lost feeling in my thumb and forefinger after laying down for a nap and have never gotten it back. I am wondering if this is the start of Ms..what is next. The thought scares the hell out of me. I feel like my own body and brain is my enemy. I hate what is happening..thanks for letting me vent

  47. To give you all the heads up…I have been taking fish oil every morning and have not had the itches it because the itchies stopped or the fish oil…I have no idea..but I thought I would let you all know..Let me know if it works

  48. Hi:

    It started July 2010 for me. I was on a job site and lifted something a bit on the heavy side and strained my upper back. There was instant burning. It took a few weeks for the pain to go away.

    About the same time I went through a real bad time with my wife and my feet, back shoulders, elbows started burning like crazy.

    I went to my allergist and a gp and they said it was stress and anxiety. They gave me xanax and steroidal creams. The xanax made the symptoms go away but I did not want to become a junkie so I stopped taking them and the symptoms came back.

    I was then told I had low T and that would explain the burning skin.

    That was after a full battery of blood work….they checked for diabetis, RA, liver, Hiv, Lupus…all negative.

    Burning back went away but feet are burning, hands are itchy and just started getting buzzing feeling on right hamstring.

    Have appointment with Nuero on 4-5-11, scared to death of the whole process.

    My eye sight seems to be good although my vision does seem not as sharp as it was but the burning hands and feet really have me worried.

    Any words of knowledge or encouragement?

  49. I do not have MS although awhile ago one neurologist did diagnose me with benign M.S. another diagnosed me with microvascular disease. Anyway i have started with itching like I can’t believe. I am losing sleep. I have tried benadryl which doesn’t really work except that it eventually knocks me out so I do get some sleep. It recently happened at work. Ice helps for a short while. Even though i don’t have M.S. I will check here and other places for a solution. I’ve also tried cortisone creams. My friend said it might be from dry skin so i bought an oil she suggested. It didn’t help. i am not giving up on finding a solution.

  50. Hello,

    I am so happy that I found this site. I thought I was the only one experiencing this horrible itching/skin crawling. I have been to many allergy doctors and they give me anti histamines which only gives temporary relief. I am determined to find permanent relief.

  51. 3 weeks ago i began itching when I went to bed. the back of my head, on my arms and legs. Some nights between my toes. some nights not at all then the next one will be horrible. Last night both legs. Took Benadryl, makes me groggy the next morning and gives me a headache. I have been using cortaid and it helps some. Has anyone taken Zyrtec for it at night. I need something that will stop the itch but let me sleep and not be groggy. Will this go away ???? Is it MS? I am worried after reading all of these post.

    • I am sooo glad I found this blog! I have been having “itching attacks” off and on for 2 years and my neuro and primary physician told me that there is no way it could be related to my MS. I have sensory MS and it seemed to me that touch is a sense, why not itching? They all look at me like I’m crazy and don’t know what I’m talking about. As I sit here looking like I have leporsy, I am almost whooping with delight that I am NOT the only one!! THANK YOU EVERYONE FOR CONFIRMING THAT I’M NOT CRAZY!!! I’ve printed the article from crazygirl and will take it to my neurologist this week. I can’t wait to see his reaction! I’ve tried ignoring it….just can’t do it! I’m on Copaxone for 10 years. Guess I should be grateful that I don’t have any other issues. Thanks again 🙂

  52. I was diagnosed in 2000. Had an easy time of it until 2007, after my twin boys were born. Since then, I have had a relapsing symptom that I am unsure of what to call it- dyesthetic itching or nerve spasms- kinda feels like the same thing really. As this symptom has come and gone it has gotten more disturbing and lasted longer each relapse. I have been suffering with the current relapse since September of 2010 and it is most disturbing when I am not moving/at rest/at night. The only thing that helps is Gabapentin and Baclofen. I am also taking Copaxone, which seems to do nothing to help things from progressing. I am most likely going to start taking Estriol as well. I am always reading, researching alternative meds.. I hate drugs and am taking too many as it is, in my opinion. This symptom feels like my skin is infested with some nerve-ridden crawling sensation. I have become a master of ignoring it to reign mind over matter.

    • You are not alone, at first I thought the itching was eczema,,,,,no way did any treatment for eczma help. This has been going on for 3 years, at first I tried every over the counter anti itch cream, oitntment etc. I have seen my primary care physician and was referred to a dermatologist. I did put off going for some time then when I went I was told it is eczema. I tried for 1- /2 years treating it as such. I to have had that terrible sensation of something crawling under my skin. It wakes me up in the middle of the night. I have gouged my skin in my sleep…it is driving me to a breaking point. I have been taking hydroxazine at night 25 mg and it helps stop most of the itching and I take Zyrtac during the day…

      Needless to say the itching continues but not as horrific as it has been. Lately, I have take to pouring 1 cup hydrogen peroxide into my bath it seems to help in cleaning and clearing the damage to my skin.

      I go to see my neurologist this month and hopefully he will have a better plan….

      I do believe this is one more problem we suffer with MS, it is not an aberration of the mind.

  53. The itching is unbearable!!! I too feel like little bugs are crawling on my skin. My feet and leg are so raw from scratching it looks like I got attacked by a cat. Neuro doc told me it wasn’t MS related, Derm gave me topical cream and antihistamine that is not working. Currently on Copaxone and taking Topamax for migraines. Does the itching ever stop on its own? Going on 2 weeks and it’s getting worse!!

    • take a skin sample for scabies… doctors hate being wrong, and they always say its not scabies. Long story, but anytime I get a strange itch, the first thing I do is make sure its not scabies. Trust me, scabies sucks and its easy to get rid of if you dont have a bone-headed doctor.

  54. So happy to find your blog. I have had severe itching in my upper arms for 6 years. It is the worst when I’m in the sun, and and night. I have had ms symptoms since 99. I was diagnosed last september after a bout of blindness. My neurologist says the itching is not ms related. I think he’s wrong. I have an insanely clean and healthy diet.. and have for several years. I’ve also taken 2400 mg of fish oil 2x a day along w/ another hand full of supplements and vit b shots,and cycle 75 miles a week off road. For many years.

  55. I was diagnosed in 2001 but until today have never had the itching, bug crawling symptom. Well, I have it now and when in doubt, I google the symptom, and it is almost always MS related. I think I scratched my nose raw until I realized it was nerve related. I took my morning dose of neurontin (gabapentin) early and sure enough within an hour, the itching became tolerable. Am one of the lucky MSers for which neurontin works on numbness, and it is working on the itching too. Of course, this would happen on a Saturday, so I have to wait until Monday to report to my neurologist. Just as well because I know a new and severe symptom means an attack and will necessitate an MRI with contrast and IV prednisone which I hate. I’m secondary progressive so attacks are few and far between now. This blog has been very helpful. Thanks. Will answer any questions. Oh, and Erik, many people have a hard time getting a diagnosis and my guess is that it is insurance requirements that cause it. It took me 6 months due to a requirement for two MRI’s 6 months apart with a lesion increase to qualify for the diagnosis.

    • I was diagnosed in Aug of 2010. I don’t know when the itching started but it started out as an itch on my outer thighs. Sometimes on the top of my feet. I’d scratch and scratch until it became a big bruise. It would come and go for periods of time. Just recently I started itching all over my body including my nose. It can last for a couple of days. The only way I can describe it is something under my skin. It feels like nerve endings flaring up under my skin. I don’t know how to stop it when it happens. It drives me crazy. I also looked it up on the internet several times and discovered it could be a symptom of MS. I haven’t brought it to my doctor’s attention yet but I will. This is my third or four episode. I won’t be satisfied until I know what it is and how to make it stop.

    • Dear Janet,

      Last week I was diagnosed with LOMS: late onset. I’m a very fit and youthful 62 going on 63. I’m scared stiff about this condition. I just got married one year ago at the end of April. I have an appt. with my neurologist next week to confirm, but I have many of the symptoms. Can I ask how you’re doing? How old you are? MS is quite rare at my age, I’m probably primary or secondary progressive. Any comment from you would help.
      thank you,

      • I was not diagnosed until I was 51. I had a back injury that required surgery. The leg pain I experienced with my injury did not go away after the surgery. The doctors told me to give it time. Things did not improve and I began to experience restless leg and itching along with the pain. Then the fatigue set in. My daughter had been diagnosed with MS several years before me. She did not have all the strange sensations that I was having and none of the doctors ever mentioned that I might has MS. I diagnosed myself the day I first experienced Lerhmites (sp). I had a sensation of someone sticking pins un and down the back of my neck. I knew what that was.

        I still have itching and it has gotten worse over the last few years. It drives me crazy. I can’t sleep and antihistamines don’t help. I am afraid my doctor will think I am nuts.

  56. I also have itching, it was my first symptom. I actually thought it was shingles, but a rash never appeared. After optic neuritis immediately followed (plus an MRI, spinal tap, and blood work in the month to follow), I was diagnosed. It comes and goes, but always in the same location, the top of my ribs on the right side and lately across my chest. I found this article:
    Print it out, take it to your doctor and then tell him/her “I TOLD YOU SO”

  57. This has continued to be a very popular post so I will give a quick update on myself. I have not had any itching problems in years. I do not know the exact cause, but if I had to guess than I would say it would probably have been from one of the confections I had with Lyme. As I state more below since the lesions are not all gone this leads more credence to it being not related to a lesion, and the fact that it does not come back when I am hot.

    On a personal note I am not all better, but somewhat stable. I am much better than I was when I started and I am no longer having relapses, etc. On the other hand I do still have lesions on the brain. If the lesions are caused by MS, Lyme, or something else I do not know. At this point they appear to be silent lesions and I am neglecting them for better or worse. For quite a while I have not been taking any treatments.

    Best wishes to all of you as you seek answers and are looking to get better!

  58. One year ago I had a seizure for the first time at age 28. Doctor gave me an MRI and said the white matter in brain scan showed possible MS. I also have had chronic itching on my arms on and off for the past two years. I am seeing a neurologist for me seizures and he doesn’t seem to be concerned about MS or the itching. Does anyone have some advise or input on this.

  59. Wow!!! Im so glad to know im not alone! I was diagnosed with MS in 2007. I only have a mild case, and I haven’t experienced many symptoms. Here lately however, I’ve been itching g like crazy with no rashes ever present. Id never heard that itching was a symptom of MS until reading these comments …I even read where gabapentin helps.I seldom use it because I don’t suffer with a lot of pain, but im gonna try it now…I pray it works

  60. I was diagonosed in 1986 and am more often in remission than in a flare up. However, for the last year or so, I have had bouts of severe itching all over including the top of my ears and on the bottoms of my feet. Once I had to call an ambulance because I started having trouble breathing. I never develop a rash but have often scratched so much, the area looks as though a cat has attacked. I don’t take any medicine but Amantadine for fatigue, which doesn’t work all that well. The only way I can somewhat bring the itching under control is to take antihistamines, which just adds to the fatigue. Also, since I am a special education teacher who works in an elementary school, when I start itching at school, it’s hard to ignore the sensations.

  61. my first symptoms were itching – can’t tell you how many bad/crazy diagnoses i had for that – an alergist gave me doxipin and that helps to keep the itching at bay most of the time. if i am off the doxipin for more than 2 days the itching flares back up again. and i can’t take more than 50 mg of the doxipin or i am a zombie the next day – adding a benadryl willl sometimes help but say goodby to the day ’cause you are going to be asleep. this has been going on for > 10 years. when it gets really bad, even my eyelash line and the inside of my ears will itch. I look like i have fleas. I have taken a hairbrush to my skin just to try to relieve the itching. the scratches and bruises are awful but the itching won’t stop – especially at night when there are no distractions. I hate to tell you, but it doesn’t ever go away. I now have a new neuro who (once again) says it is not MS related and wants me to go back to an alergist and she won’t renew my doxipin. I’ve already had all the alergy tests. This IS a symptom – i don’t know why they won’t acknowledge it. My last neuro did –

    • Dx 2008 but have had MS for well over 20 years and in the past year, I’ve experienced horrible itching attacks, sometimes I thought it was no see ums but after several transient attacks I’m inclined to believe it is MS related. Now my Dr’s don’t seem to think so and that is incredably frustrating! In December 2011 I started having an out break on my legs and tops of feet, my top lip also swelled up several times after stressful situation. I ended up having my whole face swell up and itchy skin lesions that topical remedies could not contain. ER was a last resort, caused by all over welts or hives. I was given steroids and sent home. I had not changed anything, eaten anything, worn anything or been anywhere new. I had an MRI the next week and it confirmed I was having an exasperation with two new active lesions in an ordinarily un effected right side of my brain.
      Now I know that the easy assumption would be “I ate something” or came into contact with something but I did not. Hives and itching can be caused by stress and my ventricles were both swollen, the Hypothalimous is responsible for hormone dispersion through out the endocrin system and if the brain is swollen and applying pressure to the area , is it a huge leap to presume that might cause the Hypothalimous to malfunction causing the Thyroid to miss fire some histamine into my system?
      Science has got to listen to the patients who experience the diseases they study, not just regress to the easy cause but instead…think a bit more. That’s what we pay them for after all .

      • Stress, among other things, can bring on a condition called Urticaria. Urticaria can have itching associated with it. With my itching there was not a physical marker, it was all neurological. Based on your description you are having a very physical manifestation. It would seem unlikely to me that a physical outbreak is MS related.

        If it is Urticaria that can last for a while and if it is recurring with stress you might want to investigate a preventative medication.

        Good luck with your itching and your MS!

  62. They are now testing me for Lupus, if you look up Lupus rash on legs, I could have been the model.

  63. I was diagnosed last week with late onset MS. I’m 62 and newly married. Is anyone out there who can connect me with others who have MS at this stage of life?

    • I would recommend that you visit the National MS Society and find your local chapter. They tend to have a lot of events where you can connect with other people.

    • Carine, I’m curious – Do you think this is a condition you’ve had for many years without realizing? My 75yr old aunt was just diagnosed with MS. I’m 53 and have been experiencing symptoms for over 20 years. Recently have had relief from taking LDN (low dose naltrexone).

      I found this blog while searching the “itching” symptom. In the past, it’s usually been evidence that healing was taking place. I know that this time, the severe itching in my arm has replaced the aching shoulder pain and lost hand dexterity of two weeks ago. Now, the pain is mostly gone and full use of the hand has been restored. Praise he Lord!

      Someone on another board mentioned a product called “Ting” available in the athletes foot section of Walmart. I hope hat helps with the itch. In the mean time, back to my hair brush.

  64. Thank you, Erik.

  65. I have had itching on and off for years. I think it happens to me more often in warmer climates and definitely when I am having other symptoms like the burning skin thing or tingling, they sort of follow. Being that it is NOT an allergy thing but rather a neuro thing, in the past I have taken GABA in large doses, but yeah it make you sleepy. GABA is the base herb for the drug Neurontin, comes in dif strengths for you to experiment with, I was taking 750 mgs, up to 4/day – really sleepy with that much! Having it again now, mostly at night , or in the sun, and trying desperately to stay away from the GABA. Toss up, don’t like the sleepy drugged feeling, nor the itches that can wake you up and drive you mad!
    Any other suggestions?

    • I know I have MS , was diagnosed over 25 yrs ago. I do take LDN as my primary neuro assistant. but staying away from heat, sun and being Gluten free are my other help mates.

  66. Try Valerian root available from VitaCost ! ! It helped my stress, anxiety and hives. I haven’t been itchy in a whole month.

    • Hi Tracy, I hope that you’re doing well. Would you be kind enough to provide more information about Valerian. Did you take Valerian Root Extract? How many capsules each day? How many mg? How long until you felt some relief? Did the itching ever completely go away? I am going really crazy from the itching. Thank you so much for any help.

  67. Tracy –
    I had some Voltaren cream that is a pain cream with Valerian in it. Used it about 2 hrs ago and so far so good. I do not want to speak tooooo soon, but THANKS for the idea! This just might be the answer. The real test will be after sleeping, if it holds up and the itch does not wake me. I will reapply after shower tonight.
    Thank you again.

  68. Oh I hope it does help you, I’ve never used the cream. There is a Tazo tea called Calm and that contains Valerian root also. I do pray you find relief!

  69. Thank you for your help and concern. I found that the voltaren is just a NSAID cream, and tried Traumeel instead last night. Found it helped just as much with less chemicals. FYI from reading I also found that valerian, GABA and Valium can all be used equally as supressents for neuroreceptors and all will make you sleepy, great if you have insomnia and itching but right now it’s only the itch that will wake me. Also found that if I lie on my side, ie on one of my arms for too long, the itch starts, so if I adjust my position often enough I avoid the itch somewhat. Must be something about building up heat or sweat in the area.
    Thanks again. I hope our comments help others as well.

  70. I’ve had itching for two years but it gradually turned into a chronic condition and eventually turned into both internal and external hives. I was forced to ultimately go to the ER where they DX it as idiopathic hives.
    Well two months of high steroid intervention , I decided to start being my own ( beneath Jesus of course) best advocate. I started to track down histamine production and where that is connected to my M.S. and my flare ups . Well I found that histamine is produced by the thyroid and the thyroid has obviously been freaking out so then I connected that to the Hypothalimous , located deep with in the brain. My brain has been swelling due to old and new delmilation . Could it be? That my anxiety and hives were a result of my brain under stress?
    Started studying the nervous system and found Valerian root extract in a nervous system suppressant . So I started taking to capsules morning and night and to my delight, my hives have not returned since.
    FYI the hives returned even during Steroid treatments. Sleepiness wears off after a couple of weeks.

    It’s awesome relief, I too hope this helps you all!

    • Hi, I hope that you’re doing well. Would you be kind enough to provide more information about the Valerian Root Extract that worke for you. Capsules with how many mg.? How many days before you felt some relief? Did the itching ever completely go away? I am going REALLY crazy from the itching. Atarax/Hydro is not working. Thank you so much for any help.

  71. Hi Everyone, Not sure if this will work as it’s my first time on this forum. I have suffered many symptoms over the years to included severe itching all over my body that can only be stopped by taking Cetrazide. If i dont take it for a couple of days i break out everywhere and it,s awful. You can write on my skin and it leaves the letters there in red for a while. Weird….

  72. I wonder if that’s like cetrizine , the generic for Zertec. I’ve found my hives have been subdued by progesterone cream twice a day. You can find it online at VitaCost or in your local health food store.

  73. Please check out the National Multiple Sclerosis Society web site. Itching associated with MS (pruritis or paroxysmal itching) is discussed, and a few medications are recommended, e.g., Atarax (hydroxyzine). This “legitiimizes” MS itching. I suggest that you print out these pages and bring them/fax them to your neurologist or internist. Also try BioFreeze and Eucerin Skin Calming Cream. Trial and error.

  74. Thanks Jan!
    I did use that and it was effective but my doctor wasn’t impressed, ER prescribed it to me. Hydroxine I think, is the name at 25 mgs.
    The tip was well appreciated!

  75. I buy my Valarian Root in capsule form from VitaCost. I take two capsules 3 times a day about 3000 mgs . I could probably back it down to twice a day and will soon since I am doing so well. Once in the morning (2 capsules) and once at night would do I think. Two capsules equal about 1,200 mgs so two times two capsules would be roughly 2,400 mgs.
    Another point to consider, progesterone cream has also been a great reliefe to my hives and anxiousness. I am 42 and not yet in peri Menepause (so they say) but I’ve been having sparatic hot flashes for over a year. This could be another hormone misfire due to 20+ years of MS.

    Hope this helps you and feel free to email me at ” :0)

  76. Elizabeth, what is GABA ?

    • GABA is something you pick up at the health food store, comes in various strengths, I took 200 mg, comes up to 750 mg. I find the stronger ones leave me groggy the next day.
      It is equivalent to the prescription drug Neurontin. Of course you don’t need a doctor to prescribe GABA. Here’s more about it at this link

  77. Good to know Elizabeth, thank you. We can never give up on the natural suppliments that are all around us.

  78. Thank you both so much. Elizabeth, did you ever try prescribed Neurontin? I am curious whether an MD told you about GABA? I have an appt. with my neuro on Tuesday, and will ask him about it. My internist prescribed Atarax, which did not work. I also went to a recommended acupuncturist/MD, who gave me the herb “Relaxed Wanderer” that did not help. With much gratitude, Janice

  79. I see a doctor who is also a natropthic md and suggests natural supplements as well, tries to heal using natural and goes to regular prescription drugs when the natural ways don’t quite do it. I learned thru my own study that Neurontin is made from GABA and have preferred it since. Neurontin will be whatever strength is available and GABA comes in different strengths so you can adjust to YOU rather than to the MASSES.
    We all have computers and can search key words and find natural suggestions for our ills. When and answer comes, just make sure it’s a common supplement instead of a hyped pill that promises the world without really telling you what’s in it. Check out some of the majors in supplement supply like Swanson, Iherb, Life Extension, VRP, Vitamin Shoppe, etc.

    • Elizabeth, you are very fortunate to have such a open minded Dr. My doctors are pretty dismissive of natural treatments, they just think they only mask the disease. But I’m very hesitant to run to meds first, instead going to feedback from others and other outlets. Most of my herbal finds we’re brought on by negative test results and unrelenting symptoms. The Dr’s can go home but I have to take my disease home with me, so I’m gonna learn as much as I can.
      By the way ladies, there is a herbal trinkture called California Poppy that drastically improves pain. It’s found on EBay for about $20. Another helpful diet change has been the addition of Indian (India) spices like Curry, turmeric , and some others like long pepper and grains such as maranatha . These all can be found on the Dr. Oz website. These spices are none antiinflamatories and have proves very helpful.
      Also keep in mind that you should always let your dr know what your taking, my Dr. Has a very long list of natural suppliments I’m taking including Omegas, DHA, D3 and every other letter in the alphabet .

      Feel free to ask me any questions you might have. I also have a MS blog on YouTube. Peace and blessings to you both.

  80. My husband just started on GINGER capsules for anti-imflamatory relief. He does not have MS, but a lot of spinal and arthritis issues. He is amazed at the results.
    Yes, we all have to look into the naturals ourselves. Read a lot before you take, just in case . . .
    It’s better to be over informed.

  81. I itch all he time behind my neck. At times when I scratch it the itches move across my head then to the sides of my neck. Then I get goose bumps in waves of 3 or 4 quick episodes.

    I actually itch all over but the nape of my neck is the central point. It is kinda like a bad sun burn on my neck.

  82. Am just another ms diagnosed person who has the infernal itch symptom, an has had both a personal care doctor and nuero doc tell me no way, an probably not. Am taking copaxone an nuerotin as so many else do. The dose of nuerotin is pretty much non effective unless i take like two more than recomended. I do wish to see the day when doctors maybe read these web pages an put two an two together. But i figure that they only say its not ms related because of pride fed by a lack of meds that will truely arrest this symptom some. However I haven’t had many problems after being finally diagnosed while being in the hospital with a palsy in my eye so beggers can’t be choosers I guess. Prayers for all though.

    • Josh, the whole reason I did find all these natural aids, is because the Dr’s only know what their taught by other Dr’s and books. They don’t find our experiences credible.

      Hydoxcine (sp) really does work! By accident due to ER script for way serious hive out break along with three months of steroids and 45 lbs of water weight gain!

  83. I have had Follicular Non Hodgkins Lymphoma since 04 and had surgery and 22 radiation treatments.
    Then had more surgery in 09 and did 8 chemo rounds and a treatment called Zevalin a radioimmuntherapy which put my wbc and all my blood work in the toilet.
    But have been in remission since dec of 09.
    Three months ago I broke out into a horrible itchy rash on both forearms. And I seem to itch on my back but no rash and other places with no rash . But went to two drs and they gave me topical creams and it subsided but it keeps breaking out again. And I itch other places but the rash on my forearms comes back up and looks like it is under the skin. I wonder if something in my blood is causing this?
    I am so puzzled
    Any advice on this? Thank you Hilde

    • In my own experience I’ve found that physicians are quite limited to what and what not they can help us with. I suspect because of so many malpractice suites, being a visionary in the medical world is a touch taboo.
      Bottom line we can only rely on them to diagnose the “known” ailments and we must treat the unknown. Hormones should be considered when searching for the cause of your itch. Not simply caused by your hormones but where your hormones are regulated from..your Hypothalimous located deep within your brain. The brains behind your endocrine system and one of the primary itch instigators ” Histamine” ….
      I hope you enjoy learning cause there is a lot of reading to do :0)

  84. I know nothing of follicular lymphoma it would effect you down the road even after treatment. MS itching (at least mine is) is a neurological itch caused by nerves going spastic for some reason unknown by MS researchers etc. This is why I found treatment with creams only good for treating the skin that I have irritated with my own scratching. Otherwise I go to the source, NERVES, and use herbs like GABA to quiet nerve action. This seems to work best.

  85. I have not been confirmed with MS yet. Have to get another MRI done. I have had the itching symptom for several years and just thought it was a reaction from heat and sun. Needless to say the itching has now gotten so severe it wakes me up from a dead sleep. My other symptoms include fatigue and pins and needles in my hands. I just want to Thank you all for the info on the itching, I felt like I was losing my mind last night from the severity of the itch.

  86. Get that MRI done and a spinal tap too if suggested. We all go thru a denial stage but the sooner you know, the sooner you can begin life again. There is help for most of those symptoms and a learning curve on how to cope with the others. Whatever the outcome on your diagnosis, you will have a place to start.

  87. Hi Liz,
    I did have the spinal done back in April, but it did not confirm MS. The MRI showed lesions on brain and neck. On Wednesday I go for my second MRI with contrast.
    I already am pretty sure that I have MS and was not waiting for confirmation. Just set about life with some changes. Diet, working out everyday and quit smoking. You don’t need a confirmation when you have had pins and needles in your hands, feet, legs and the MS hug. I have had itching for several years, but just didn’t know what it was from. The fatigue can get to you, but I push myself. What else can you do. I go to work everyday and just keep my pace in check.
    I am thankful to have found this site. I wrote down a few things to try and alleviate that chronic itch!!
    Thanks again for listening.

    • The only relief for me: (1) applying an ice pack to the itch and numbing it – gave me relief for a half hour or so, and (2) at the office, applying Eucerin Skin Calming Itch Relief Treatment with Cooling Menthol — relief for 10-15 minutes at best. No other Eucerin product or other brand worked for me.

      This past summer, I experienced unbearable, intense itching on one part of my back. On a scale of 1-10, a few episodes daily of 7-10. My MS neurologist tossed me to his MS nurse, who kept increasing the gabapentin (neurontin), without success, while reiterating that the itch is difficult. I withdrew slowly, and went to see another esteemed MS neurologist for a consultation (not covered by my insurance). He also prescribed neurontin (albeit higher dose), and a low dose of Elavil (?) if needed. Both neurologists were also alike in their lack of sincere concern. By chance, the weather started to cool and so slowly, did the itch. Gave it some time – did not and have not resumed medication. I have severe heat intolerance—my MS symptoms exacerbate during the summer –why the debilitating itch appeared this summer and not past summers—I don’t know. Hoping this summer was an aberration. Prior to 2012, I would get an itch a few times each week in the exact same location on a scale of 1-4 unrelated to the temperature. Now, I itch a few times each day, a scale of 2-3 daily. No more 6-10s. I have an appointment with my new MS neurologist, covered by my insurance, who is highly rated by PATIENTS. I will discuss, among other things, the itch/relief and of course, share info. I am so thankful for MS websites.

      • Jan
        Thanks for the info. You sound like me. My itch started very similar to yours. Just occasionally. Please keep us posted on what the new guy says.

      • Yes I believe that MS itching is very more likely during HOT spells. and yes Heat is NOT good for MS. I find few doctors or anyone for that matter who take the itching seriously and cannot imagine that a simple ITCH could be so frustrating, annoying and even mind blowing. Just short of pain and yet just as debilitating.

  88. I was diagnosed in 2001, have been on copazone since March 2001, never missed a day. Last fall in September I started getting unbearable upper itchy arms, mirrored on both sides. It went away after several months and now it’s back again. It happens generally at night, and I itch incessantly. The only relief I get is ice packs. So I fall asleep with ice packs on my arms. Yesterday I began getting a rash on my right wrist and now it’s on the left wrist. I itch and itch and itch. Benedril does not help. Any into to help would be appreciated.

    • I had an intolerable MS Itch from July through September 2012 on my back. On a scale of 1-10 (worst), I experienced an 8, 9, 10 each day. These episodes have ended. I too found some short-lived relief numbing my itch (mid-lower back on 1 side) with ice. Neurontin did not help me, although it has been very successful for others. My Itch is not completely gone – I would say I have a 1, 2 or 3 episode each day – I’m living with it. I found that “Eucerin Skin Calming Itch Relief Treatment with Cooling Menthol” gave me relief for 15 minutes or so – I don’t know why — no other Eucerin product or other moisturizer worked.
      Having said all this, I would make sure (confer with neuros, derms and internists) that MS is in fact the culprit. The reason I say this is that in my unprofessional experience, the MS Itch most often occurs in one spot on the body – and almost always without any rash. I am hoping it is not MS-related and that you find permanent relief real fast.

  89. Try some kind of neuro blocker. With MS itching is some kind of nerve acting up. I don’t think anyone know exactly why or how or what, just as much of a mystery as MS itself. I find GABA to help. It’s the basis for Nerontin by RX but you can get it in a health food store. Yes and staying cool is important. So ice is a good idea. Also I found some relief when I went gluten and wheat free. Could be my imagination but I felt different and better after going on a completely gluten free and wheat free diet. I was less tired, less itchy and had less relapses of any kind.

  90. I am so happy to find this site. I have not been diagnosed with MS but feel I have some symptoms. I am having horrible balance issues that has now lasted for 8 wks and i am waiting on the results of an ENG test. I also have tingling and burning of my feet at night, right now as I type this. A few months ago I noticed tingling and numbness on my scalp but dismissed it. I also have lock jaw on the left side of my face and I feel my vision has gotten worse as of late. Bad enough that i have scheduled strabmisus surgery to help correct my lazy eye. I recently was diagnosed w labrynthitis after coming back from vac. and when my diziness started.
    I am now wondering if it is MS. Any help and opinions would be appreciated.

  91. Has anyone tried the Lidoderm patch? Although my itch is much less intense than last summer, it is still very annoying, and my new neurologist suggested the patch. I was not familiar with it. It works for some — ya never know. Throwing it out there. I just started wearing it.

  92. Hello everyone!
    I originally started this conversation over a year ago and would like you all to know that I’ve been hive and itch free for a year now. Why? Because I am now on Paxil or the generic that is 20mg 2x a day. Paxil has relieved my itching completely , if I forget to take my second pill, I start to itch in spots and run to my cabinates.
    I told my Nero this and He took notice and said itching is becoming a annoying reality for M.S. sufferers like our selves. And he said he would be prescribing Paxil for patients suffering from itching. Spread the word and stop the scratching!

    Love you all!

  93. I have MS and have always weird unexplained systems. Every time something is strange occurs I am sent for so many tests and when nothing is found it is blamed on the MS. My biggest issue has been the unexplained itching on my legs and arms that I have at night. This had started in December of 2011 and continued until August 2012. I was given a so many types of medications and sent to various specialists and nothing. Then a doctor put me on antibiotics because where I scratched it was getting infected, prednisone, steroidal cream, and hydroxzine. After rounds of prednisone it went away. Recently, I went on vacation and it restarted. If I continue I will have to go back on steroids. I realize that any hangs in mya life causes problems. The itching isn’t the only problem. I get chronic urinary tract infections and constipation as well. It may seem like minor problems ,but when they go for months it becomes difficult. I feel that there is very little understanding of this illness. When you hear of MS one thinks of losing the function of your legs ,but no one mentions all the other nusances that occur. I also want to state that I have other issues that occur ,but that will be for another day.

  94. I was diagnosed with MS 13 yrs ago and started a low dose naltrexone a month ago. I noticed a big difference the very first day after taking it. I also have thyroid problems with nodules and swelling. Hasimotos I think is the name. I also have COPD. I had bronchitis and took a Z pack antibiotic two wks into the LDN and now have intense itching after the fourth day of that, which I am still having. Anyone else have this problem? Thanks!

  95. It took me several years and Dr’s Appointments to finally come to my own conclusions about my itching. It was my nervous system displaying just how shot it really was, no longer able to withstand the stresses of everyday life. Finally Paxil was prescribed to me for my anxious feelings I was having for the slightest thing. 10 mg 2 X’s per day and the hives and uncontrollable itching has been largely controlled. Except when I forget to take my second dose then all bets are off! Hives return.

  96. I was diagnosed 12+ yrs ago with MS and a month ago my dr started me on low dose naltrexone. I have noticed intense itching on my hands and feet. Anyone else have this? The ldn is a God sent, so I am praying its not a side effect!

  97. Hi, I have read everyone’s post and I have to share my story. I have MS and have extremely strange symptoms. When something occurs and doesn’t go away for a while then it is the MS. Don’t let the doctors make u feel crazy bcause your not. I am a very educated woman and I know my body better than the doctors. They don’t know much on MS. I have had itching on my legs and arms for six months straight every night until the point that my skin was bleeding and infections were forming on my joints. The doctors ran every test under the sun and at the end it was un identifiable. Finally one doctor gave me topical steroids, antibiotics, and prednisone oral steroids. It took three rounds of the prednisone to stop the itching. However, everytime I am stressed or under the weather it occasionally returns. I have had urinary tract infections that have lasted 4 months, vision problems that lasted two months, numbness in different parts of my body, swallowing problems, speech problems, constipation for weeks, pain, fatigue constantly, cognitive problems, and etc. Everything returns to normal, but it makes life difficult. Since this problems are minor everyone around you take it lightly or brush it off as craziness. When it comes to steroids if it is not a major necessity try to do without. I found that riding the problem out it goes away on its own. Everything you feel as an MS person is real and don’t think otherwise.

  98. It appears that my insane itching discussed summer of 2012 can be attributed to a case of shingles a few years ago — not MS. I now have very bad pain (and mild itching) in the area of shingles rash. This condition is postherpetic neuralgia. MS is almost irrelevant. My MS neurologists (a few!) should have been better diagnosticians. I am now under the care of an internist and pain specialist– right now, the pain is debilitating. Treatment is not easy — trial & error. The itch has subsided greatly — apparently, on its own. When I emphasized to neurologists (& orthopedist) that the location of itch and most intense pain was exactly same as shingles rash– I was told that it was a coincidence!!! A person who gets shingles at age 60 (me) is a likely candidate for posherpetic neuralgia. Incredible — almost malpractice. I don’t know what the answer is…

  99. The only place I itch is the back of my head and my ears (not in the canal). It happens right before I go to bed. I sometimes scratch my scalp so bad it bleeds. I have had my head looked at, there seems to be no problems with my scalp. I usually watch TV before I go to bed, the back of my head or ears do not touch the back of the chair. I thought the chair might be the problem. I have tried other chairs and have the same problem. It is quite annoying .

  100. I had itching soon after I was diagnosed, but my then neurologist said, “She didn’t know anyone who had MS and was itchy”. Seriously, she claims that MS is her specialty??? Maybe she should do what I did, for years, go to the National MS website and learn something about MS. The first time I saw my new neurologist, he was so much more attentive and knowledgeable, so when he saw me trying to scratch the skin off of my ankles, he said, “I’m going to give you a prescription for the itchiness”. He gave me a prescription for 300ml of Gabapentin, the generic of Neurontin. It is incredibly helpful, especially when I add the use of Eucerin skin calming lotion, or Sarna, Sensitive as recommended by a Dermatologist. When you look up what causes it with MS, you learn that it isn’t a new problem, but is caused by where prior damage was done – like places where you developed lesions.

  101. Sadly Dr’s are pretty much shackled to the main stream understanding of Multiple Sclerosis due to their license and malpractice insurance. Medicine used to be a science of exploration but now it’s more like a stagnant lake of dead bones. I’ve been a victim to existing lesion damage for over 20 years, including Idiopathic hot flashes, hives, itching and weight gain. I now take Paxil 20 MG which has taken the hives and hot flashes away and “Hydroxyzine HCL 25 mg” when the itching starts up, it is an antihistamine and or mild sedative. It’s been a miracle for my itching, instantly one pill and bye, bye

  102. Also 15 Mg of Dextroamphetamine ER for brain fog, fatigue and focus

  103. Hydroxyzine 25 Mg took my idiopathic itching away and my hives too!

  104. I’m going crazy itching and bleeding last night I scratched my face and eye I look hideous dr prescribe Zyrtec and Paxil pray it works before I’m scarred for life anyone else tried this

  105. Yes Paxil will be effective hopefully for you like it was for me. Also Chamomile Tea works miracles on your over active nervous system

    • Thanks for the tip about chamomile tea, Tracy. I’ve actually been diagnosed with ME/CFS, not MS but am wondering if my diagnosis is correct as I do have symptoms extremely similar to MS. The itching and burning doesn’t normally happen with ME but I’ve read that it’s definitely a symptom of MS. I prefer to try herbal and natural remedies rather than a barrage of medication so will pop out to buy some chamomile tea shortly!

      • I’ve been free of new lesions for almost 3 years , not for the aid of modern medicine but more so by limiting the stress in my life and learning to back off those circumstances that upset me. Even television shows that are filled with heart break or pain, they will get me started itching and other symptoms . Surround yourself, every inlet of your life with peace. I am and have been a born again Christian for 17 years and think and believe as you are led but I’m certain that the peace and rest in my savior has protected me from further harm.

        Keep asking , I’ll answer 😉

        • Hi Tracy, How much chamomile tea do you drink each day? Thank you so much for your consistently generous, helpful, wise comments. Wishing you the best.

          • HI Jan, good to hear from you 😉,
            I’m able to drink it according to how I’m feeling. Lately I’ve not been drinking it as much but I’ve been itching again too. I usually would take two tea bags in a cup and heat it up. I enjoy it chilled over ice but in the winter time I drink a cup a day. Also I drink it with tonic water , it contains Quinine which is helping me emencely with my stiffness and pain. Keep asking/ I’ll keep answering 😜😜😜. Hope your doing well 😊

        • Beyond the surface, doctors have no idea what the itching is about. I suffered from itching for 8 yrs. I wd cover from head to toe in the heat of summer because I was certain I was being bitten.

          Thanks to a bit of research I discovered gabernentin. And I had to really insist before he gave it to me.

          When summer is ending I suffer the worst because one mosquitoe bite or any tiny flying insects touch me and it’s over..they trigger ms itching. 800 mg of gabernentin do squat at times. HCL works but they knock me out cold.

          Stress and I right away get the biting senations suddenly all over.

          So yes Gods peace is important. The peace you speak of is the most beautiful and perfect peace I know of..

          I’m glad to hear u found it.. it comes and goes for me . I am paying for too many youthfull indiscretions, married to a man who I love and who loves me but is woefully lacking in terms of that soft compassion a sick person needs.

          But I trust God. And am with His touch, growing spiritually.. I hope to say as you I’m at ok eace..

  106. I also had the itching that was driving me crazy. I do not have it anymore and do not know why, just going with it. I stopped mine by taking up to 3000 mg of GABA daily. working the dosage up to that level as GABA can make you very sleepy but you an build up a tolerance for it and take ALMOST as much as you need (i.e. my 3000 mg). I used GABA because at the time it was thought to be a neurological itch. Nothing topical for itching helped. I tried everything over the counter including benedryl. My doctor suggested GABA because it’s the natural form of Neurontin, a prescription drug for “pain” but works on severe itching too.
    On the side, discussing weird side effects of MS – I also found that using anebesol for sore teeth, gums, made me have spasms in my arms and body. And so I no longer take Novacaine or anything like it at the dentist. My dentist came up with Carbocaine as a substitute which is much milder and short lasting. Thankfully it worked long enough to get a tooth pulled.
    The other mistake I made was to take the advice of a foot doctor who prescribed an anti fungal med by pill, like oral lamosil but I really don’t remember which one it was, and it put me into a relapse so badly that I found it suddenly difficult to walk. Of course he said it should not effect my MS before he prescribed it.
    My final weird story has to do with bedbugs. Something I am now totally in fear of. I was staying at a friends home in NYC. He never said a word about the bedbugs, I guess they didn’t bother him, whatever, but they loved my fair skin so much that before long I was bitten from head to toe. My immune system just couldn’t take it and I became infected almost instantly all over. Needless to say I left NYC after delousing my clothes and suitcase, and self in order to fly and not take them with me. going thru the airport to home, I felt week and had to ask for a wheelchair to get me from one gate to another. I have not ever been wheelchair bound in all the years of having MS. This was a first and will be the LAST if I can help it.
    I now have many cautions in my head and do not take anything at all in drugs until I do my own research. If I can do without it then I do without it………..So don’t think you have the only weird things happening with MS. It is a neurological disease that still has a LOT of unknowns.

  107. I was diagnosed with MS in June 2014, and if you think your story is weird listen to mine, I woke up one morning smelling PROPANE!! Keep in mindi don’t have propane, but the smel ( only I could smell it ) was so strong that I started vomiting and became dehydrated….I didn’t want to go to the DR. Because I thought they would think I was crazy!! Well the hospital in my town. (About like Mayberry ) just examined me and said he was going to make me an appt with a Neuro n about a couple weeks, well he was on the phone with a Neurologist At University of Kentucky aka UK Hosp. They told him to put me in an ambulance now and send me over there!! They did an MRI, Lumbar Puncture every test you can think of and I had a huge mass on my brain!! They started steriod IV on me and scheduled me for brain Surgery…..always…away so, get a second opinion!! I still have relapses every 2-3 months which requires a week hospital stay…but at least I feel like I’m being cared for correctly…thanks for letting me whine! Lol!

  108. Hi, my name is Robin. I found this page while googling if anyone with MS had chronic in hives that turn into itchy blisters. I have been having this for 6 years. About 3years ago I began to feel dizzy very often and clumsy. Always bumping into or dropping things. I’ve recently fallen 3 times. I have also extreme fatigue, and muscle weakness. I feel like Im going insane. I have caught myself saying your not sick , your insane or just lazy. Then I feel the weak essential and know something is wrong. I’ve recently been cleared of lymes disease. I have also burning hands.. And a slight vibrating feeling.. Like a buzz in my hands.
    I would love to hear from anyone… Positive or telling me I’m crazy. I just want some kind of validation I guess. Seeing a neurologist the end of August 2015.
    Hey guys.. If you made it this far, thanks for reading.and for letting me vent.

    • I’m seeing a neurologist soon too…after I have my second MRI early next month. Your symptoms sound neurological, not psychological so I’m certain you’re not going crazy. I’ve had the burning hands too. It was so bad and lasted for a couple of weeks…remitted…then returned for a week or two. Then it disappeared but I’m left with numbness in my fingers (and toes!). I’ve also recently developed a patch on my upper thigh that alternates between being numb, itching insanely, and burning like a demon. 🙂

      The dizziness and clumsiness are also incredibly familiar to me. My daughters affectionately refer to my stumblings as my ‘habit of randomly falling over’, lol. I’ve been diagnosed with ME/CFS but am having follow up MRI’s to see if that diagnosis is correct or if I have an atypical form of MS. According to what I’ve read, most of my symptoms are very typical of MS…except I’ve never had the vision problems. It’s a bit of a mystery inside my head.

  109. Hello Robin,
    My name is Tracy I am 45 and have had Multiple sclerosis 25 years. I have suffered for many years undiagnosed and I can indeed validate your ordeal. I was only diagnosed in 2008 the years prior to were spent in kaos. Everyone thinks your a baby, or a liar or even worse for me, my own Doctor thought I was nuts..Grr!
    Although hives and itching are not directly linked to Multiple Sclerosis, I can assert my own experience into facts that it is definitely related. I have had numerous hive outbreaks including my whole lip swelling up like I was assaulted. Itching apart from hives is related also.
    When you go to your Dr’s appointment focus your complaints on balance issues or your stability or Gait (Your Walking Or stride). Walking crooked and not in a straight line is a hot button that directs your Dr on the right Neurological path but mentioning your hives will only distract them from the underlying problem. Getting Diagnosed with Multiple Sclerosis is very much like applying for a home loan with shaky credit.
    I now take Hydroxyzine for my itching and Paxil (Generic Paroxitine) for my hives. Also Chamomile tea is extremely effective at calming your nerves which is exactly whats needing to be calmed “Your Nerves Are Shot”.

    It seems stupid to say I’m not a doctor but I’m not. I might actually know more about M.S. than they do though. Be Strong, Pray to Jesus and He will restore your peace.

    YOU ARE NOT CRAZY! Loves Tracy

  110. Hi Tracy,
    Thank you So much for your reply. I saw my primary care physician yesterday and he has decided to go ahead and order my MRI before I have the visit with the neurologist the end of August. I am so relieved to have someone to communicate with. My husband is not quite sure I’m sane anymore.. Haha
    I’m 51 and my symptoms began in most recent symptom started just a month or so ago. That is heat intolerance. I can’t even take a hot shower anymore. Do you have this problem?
    I had a ton of blood work done which all came back either within normal range or negative. That includes a test for autoimmune? I was devastated because I was so hoping to have something concrete for the doctors to see.
    Anyway, I wouldn’t mind staying in touch with you, if you feel like it. I won’t be offended if you don’t, because you have no clue who I am.. Haha
    Thanks though

  111. Heat intolerance is common with MS. First, avoid hot showers Don’t go outside when very hot. A/C, A/C, A/C. I haven’t been outside (heat wave) for 2 days. Many use cooling vests. Heat VERY seriously exacerbates my MS symptoms, e.g., weakness, fatigue—but only temporary until cooled down. You want a neurologist who specializes in MS (maybe an MS Center) for the diagnosis and possible MS medication. You want 2nd opinions. But they are not necessarily good regarding treatment of symptoms. You want a really good internist. Also the sharing on MS internet sites can be very helpful. Good Luck

    • Hello, I am fitting in with everyone here. I’ve been misdiagnosed with so many things it’s insane. I’ve been to every sort of specialist known and finally been referred to neurologist and a neurosurgeon. I fall sometimes a few times a day and fall hard. I don’t know how I haven’t split my chin or head opened yet. Also, I drop and break everything because I can’t grip. I stagger like a drunk, vision is worse in winter for some reason. Double vision, strange head aches with tiny tittle rainbow streaks (so bizarre). What worries me is I had been diagnosed with lyme before. Went through iv picc line for a yr. Most drs symptoms well your treated for that you should be good. When I think back I never could were any sort of fabric except t shirts and soft jeans skirts since I was very young. Something was wrong since I was tiny but noone knew what. Mom just thought I was picky and didn’t like tags or seams in my clothing. Anyone have suggestions on what I need to go over with neuro drs? Oh and if I still have lyme which there’s no way of knowing then steroids are forbidden. Will the dr need an mri to s eè what my he’d looks like for dignosis?

      • Carrie,

        I want to ask my dr to send me to the neurologist to get checked out but I’m afraid she’ll think I’m crazy. I have a family history of MS and I have the itching, pain, weakness, numbness etc. It seems like they always have another diagnosis or reason for each symptom though. Your post stuck out to me because I also had a really strange sensory issue to certain clothes when I was a kid! I’m dying to know what your neuro says and does. Would love to get an update from you!

        • Leah,
          My name is Tracy, I hope you don’t mind me commenting on your post w/ Carrie but I know a lot about being in limbo about an illness, I’ll be praying for your process.

  112. Robin, I’m wondering if you’ve been diagnosed. I’m no doctor but it certainly sounds like you have MS. I also just found this page googling multiple sclerosis itching. I have been MS. Diagnosed in 2011, I’m 30 years old. For the past month, on and off I’ve been itching like crazy. Nothing is helping. I’ve only gone to my family doctor thinking I must be having an allergy but there was nothing I’d changed or eaten differently to explain an allergy. What I have is exactly as described in the articles on MS itching I’ve read thus far. Learning new things about this disease every day. Never knew itching like this was a symptom.

  113. Shauna,
    Thank you for your validation! I’m in the process of hoping to be diagnosed. I’ve just had an MRI, but they said it looked normal except for an abnormal white mass, but they don’t believe it’s a concern.
    I go for my first neurology app in 3 weeks. I’m very discouraged and quite depressed. I know in my mind that it’s MS. I know getting a diagnosis is going to be difficult. I have 95% of the symptoms.
    Tell me your story? 🙂

  114. Janice,
    Thank you for your advice! The heat is a killer for me. And taking cool showers isn’t all that pleasant either.. Haha
    Other than the dizziness and clumsiness, I find the intolerance to heat to be one of my worst symptoms. I live in NC, and this summer has been tough!!

  115. Ah the question I used to dread being asked during the 20 years I struggled to define my disease. When I would go from site to site looking for anyone who would just help me. Not ask for my resume, that’s what I felt like when asked if or when I had been diagnosed. Diagnosis of Multiple Slerosis is really a misnomer, there really is no concrete diagnostic protical for M.S.. Only a insurmountable of evidence that one has nothing else, no other affliction,and no other disease .
    The point I’m trying to leave here on this blog today is; be gentle with those who visit . They need help we can give them, help we should want to give them freely. After all, what we say to encourage others and even share our experiences will not make them have M.S. If they don’t.

    Peaceful dreams ,

  116. Tracy,
    You have more personal experience than anyone I have ever met. I love and respect every thing you post and the knowledge that you share.

    If you have come to this website to ask questions, be sure to check out Traceys YouTube page. You can leave questions for her there and she will explain things in plain and simple terms! It’s very helpful for those of us who are looking for answers of any kind!!

  117. My Daddy was diagnosed with MS in 1992 and I just lost him in October 2013. Granted he was a heck of a fighter and yet never complained once he had the rare PRMS. His older brother was also diagnosed with MS but was not much of a fighter, and lived a very short life with MS. In 1996 while I was pregnant with my son I experienced some symptoms of numbness in my jaw, this was also the very first sign that led doctors to diagnose my Daddy. I did go to a specialist in Charleston, SC after the birth of my son. They did a series of allergy tests (shots), hair folical tests, and also provided me with results from a series of blood tests.

    A lot of time has past since then and I can’t even tell you the doctors name, but I do know he collaborated in a book called the Yeast Connection this was the entire reason I even went to this particular group of doctors. It’s a very interesting book and by the end of a weeks stay in Charleston and the series of shots, and the blood work he concluded that if 10 people were in the same room as me, based on a specific chemical levels in my tests, he would pick me as having MS. I have saw neurologists and had a few MRI’s on my brain with no lesions discovered the same as my Daddy at least not until later on. The spinal tap was the test that positively diagnosed him.

    I’ve had several “strange”past and present symptoms. Right now I feel like I’m going to claw myself to death. I feel burning, itching sensations in spots running from shoulders, chest, elbows, arms, hands, face eyes, knees, legs, even my ears. I feel like I’m crazy, I’ve cleaned my sheets, like crazy washed until I feel like my skin is going to peel off. I had scarlet fever at the age of 5. (My Daddy also had scarlet fever at a very young age as well). I’ve also had vision issues black and white dots, and experience numbness from time to time. I’m not sleeping well and I’ve experienced extreme stress over the past 4 weeks and for 3 of them I’ve felt like fire ants were released and planted in and under my skin.
    I know that my Daddy always had his symptoms worsen when he experienced stress. I’ve not been back to the doctor for maybe 9 years and I’ve not been diagnosed. I didn’t have the heart to look into my health while my Daddy suffered, he would have been devastated if he thought he “gave” me MS so it’s been on the back burner.
    You and I both know you can’t contract MS but as a parent and taking into account mine and my Daddy’s relationship and extremely strong bond, he wouldn’t have been able to live with knowing any of what I’m sharing with you tonight.

    The more I learn and educate myself about this disease the more certain I feel I may have MS. With all you’ve read about MS does anyone have suggestions on my next step? I’m desperate for help and I do not speak to ANY of my family or friends in fear they would blow me off.

    • Hello April,
      It’s me ☺️ Tracy Lustick and I’m available to answer your questions anytime. I’ve had one relation with M.S. , it was my great uncles daughter her name was Theresa. Her M.S. Was primarily in her spinal cord and she did have to be in a wheel chair in time. My M.S. Is centered in my brain bilaterally (both sides) my majority of my disability is cognition or understanding speech , math, problem solving , memory (short & Longterm) speaking , choosing appropriate words, itching, hives, swelling and the the first symptom I ever had was PAIN .
      I’m glad you asked what should your next step to take care of yourself – limit your stress and worry! It WILL excelerate your rate of disability. I do not need a doctor to tell me I’m right, I KNOW I’m right. I’ve lived in me and have a better understanding of my M.S. Than any book or Doctor that studied it. Doctors are only as current as their medical associations permit them to be, we don’t have that kind of time ! You can drastically improve your own destiny today without any Dr’s prescription ; Stress , Worry, anxiety, anger , depression all will speed up the natural aggression of this chronic desease and I am living proof .. I’m found on YouTube by my name Tracy Lustick please feel free to check out my blog , I forgot the websites name (😂😂😂😂🤗😂) just google my name and I’ll pop up all over the place. I’d love to help you 😉🤗 Tootles

    • In the summer of 2012, I was crazy with itching on the left side of my back. None of the meds MS doctorS, MS nurse, dermatologistS helped. I had to lie on ice to numb it for short term relief. Walked around weeping from this neurological itch. No lotions/creams helped. Then on an MS website, there was a discussion re itching and many had a positive experience with: DOUBLEBASE HYDRATING GEL. It is not sold in the U.S. I bought it on Amazon. Not cheap – about $35 for 500G pump. IT HELPED ME — not completely, but some relief. The itch gradually eased — I don’t know why — who cares. I would say on a scale of 10, for about 3 months in 2012, I had 8, 9, 10 itching day and night. Now I itch maybe twice a day (same spot) for a few minutes. I still apply Doublebase. I hope that I don’t sound like an infomercial 🙂 Take care.

    • Hi April,

      Hi April, In the summer of 2012, I was crazy with itching on the left side of my back. None of the meds MS doctorS, MS nurse, dermatologistS helped. I had to lie on ice to numb it for short term relief. Walked around weeping from this neurological itch. No lotions/creams helped. Then on an MS website, there was a discussion re itching and many had a positive experience with: DOUBLEBASE HYDRATING GEL. It is not sold in the U.S. I bought it on Amazon. Not cheap – about $35 for 500G pump. IT HELPED ME — not completely, but some relief. The itch gradually eased — I don’t know why — who cares. I would say on a scale of 10, for about 3 months in 2012, I had 8, 9, 10 itching day and night. Now I itch maybe twice a day (same spot) for a few minutes. I still apply Doublebase. I hope that I don’t sound like an infomercial 🙂 Take care.

  118. Hey. Thank you for all of your input on itchiness and ms. I was diagnosed with ms 25 years ago. The past two years I have experienced terrible itching. Gabapentin helps but not much. The itching is terrible. Nothing helps. I just want it to go away.

  119. Hello Cheryl,
    Thank you for your comment concerning itching and M.S. . Not so long ago the doctors would not even agknowlege itching as a symptom that can accompany Multiple Sclerosis but because of threads like these many of us, such as yourself have testimonies that can no longer be ignored. Itching IS a symptom of M.S. . Once again, thank you for speaking up on this thread, there have been many others who’ve found comfort in our own experiences.

    Tracy 😊

  120. Hi Cheryl, the following is from the National MS Society website. When I had my crazy itching, I had to inform my neuro’s MS nurse about this info — WOW!

    We are all different. Trial & error.

    “Pruritis (itching) may occur as a symptom of MS. It is one of the family of abnormal sensations — such as “pins and needles” and burning, stabbing, or tearing pains — which may be experienced by people with MS. These sensations are known as dysesthesias, and they are neurologic in origin.

    Dysesthetic itching may occur suddenly and intensely, but for brief periods. It may be present over any part of the body or face. It is different from the generalized itching that can accompany an allergic reaction, as there is no external skin rash or irritation at the site of itching. Corticosteroid ointments applied to the skin are not helpful in relieving this type of dysesthetic itching.

    There are, however, several medications that are usually successful in treating dysesthetic itching. Among them are:
    anticonvulsants, such as carbamazepine (Tegretol®), phenytoin (Dilantin®) and gabapentin (Neurontin®)
    antidepressants, such as amitriptyline (Elavil®) and the MAO inhibitors
    the antihistamine hydroxyzine (Atarax®).

    People who experience itching should consult their physician.”

    Take care

  121. I have had the itching for 4 years, was at the end of my tether as you all know, however after numerous blood tests which eliminated lymes, morgellons and a host of other dis-eases I came to my own conclusions. My homeopath told me I was deficient in magnesium and zinc hence still taking the tabs, however I discovered something to use is an infra red lamp, works all the time I am free for up to a month and still treating it..i use the lamp every 3 days. However rather than purchase the full lamp, which costs a fortune just get the globe and insert in a normal lamp stand it works. Something else to look into people is Tissue Salts there are 12 of them I take no 12, also eases the itch I can now sleep up to 5 hours without an itch. The days go by like a dream. God bless you all nothing like doing your own research it is your body. \good luck

  122. Hey there everyone!

    I just started a new MS Theropy , Tecfidera . Once you get past your flesh catching on fire with incredible itching … I actually feel better !

  123. The problem explaining it those who do not experience it is they don’t get it, “so your itchy big deal, I get itchy when I get a bug bite”. There is itchy and there is MS itchy. If I could I would post pictures of what I currently look like from MS itchy. The “OMG what happened to your arm/hands?” from people and I respond, I have MS as they would not believe a healthy person would scratch one layer of skin to the point of bleeding completely off.

    Most importantly, I want to thank you for posting. In 2011, I saw 27 doctors, in 4 hospitals my own Neurologist did not even take the time to visit me in the hospital when I was hospitalized in his hospital in his wing for for being severely itchy. Eventually I was transferred to another hospital to a burn unit to burn a layer off my skin this is how bad it got. I spent 12-18 a day submerged in a large tub of water both at the hospital and at home, it was only thing to help. After my MS attack of pruritus I went to my MS doctor who again, said itching has “nothing to do with MS”. In 2015 I had another severe attack of itching and again they think there is no correlation between MS and itching but I am on 3600mg of Gabapentin (more than what should be prescribed to patients) a day along with 250mg of hydroxyzine which knocks me out and I feel like crap but I take it as anything to combat the itching.

    I plan on going to my doctor next month with HUNDREDS of articles both personal blogs of MS suffers of itchiness and medically documented articles from Australia, Canada, United States on MS attacks of itchiness. I spoke at my MS Support Group recently on my symptoms of MS and nobody knew about MS itchiness. It needs to be spoken about more often as many people are experiencing this symptom. In 2011 I wanted to die, this is how bad it was it more doctors were aware of this symptom, patients with MS can be treated sooner with appropriate medication to stop the severe MS itching. Thank you

  124. As I am suffering from itching I am back at this old post looking for tips.

    Thank you to everyone who offered tips. I will now be going through them looking for something that works well for me.

  125. Oh Erik I hope you find something in these posts that is helpful to you . My solution for my hives and itching was the generic for Paxil and chamomile tea .

  126. I been told I have MS but I come close to healing well when trying the leaking gut diet. Read that pesticides and food grains irritate the wall in our stomach leaking partical into our blood stream. All powder chemicals that chain restaurants add to get moldy food has an effect on the good bacteria in our system. Fastening few days with brooth liquids then replacing good bacteria eating yogurt or probiotics helps heal the linning of your stomach wall. when you flare ease on the food. Avoid carbs (bread, pastas, spices). Try meats only and when worsening return to brooth

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