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!)
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
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.
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.
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.
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,
Carine
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.
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: http://www.neurology-asia.org/articles/20102_185.pdf
Print it out, take it to your doctor and then tell him/her “I TOLD YOU SO”
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!
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.
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
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.
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!
They are now testing me for Lupus, if you look up Lupus rash on legs, I could have been the model.
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.
Thank you, Erik.
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.
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.
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.
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!
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.
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.
Gaba 200 mg taken 1 – 2x/d more, better at bedtime did it for me after only 3-4 days
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….
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.
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.
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!
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 ” littlesavedgirl@yahoo.com :0)
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 http://en.wikipedia.org/wiki/Gamma-Aminobutyric_acid
Good to know Elizabeth, thank you. We can never give up on the natural suppliments that are all around us.
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
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.
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.
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.
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!
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)
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.
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.
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.
Liz
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.
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.
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.
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.
Thanks
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.
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!
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.