Jul 202016
 

Dammit, and I thought for certain the itching was gone for good. I look at the date on the post and think time flies and it still has not been long enough for the itching.

This time the itching is a little different in that the itching started after the third dose (1g each) of solu-medrol. Because of the steroids and the fact that they can cause itching I played a mental game for a while as to what was causing the itching. I thought there are good reasons why it is better if it is the steroids. Importantly, I will quickly end the steroids and the problem should stop. Also, if the steroids are making me itch that is at least a cause which beats neurotically scratching with no cause. I just have this mental picture of me in straight jacket in the psych ward because of my crazy itching. 🙁

Sadly, I do not think it is the steroids causing the crazy itching. Here are a few of the reasons that I think most point to a multiple sclerosis issue:

  • The itching is at the same location as it was 12 years ago, my left arm. That said it is now in my right arm a little too.
  • The itching is exacerbated by heat. Usually some of my worst itching is at night while I am warm under the blankets. I can mitigate, get rid of, the itching by moving out from the blanket.
  • Itching never relieves the itch.
  • The itch seems to come from deep under the skin.

I know people posted lots of useful tips on dealing with MS itching in the original post above. Now I have some reading to do. Thank you for all of your suggestions and tips.

Adding insult to injury I have now scratched too much! Eriksgirl noted today that not only do I have an injury from scratching, but that it is infected. Eriksgirl banned me from itching the one site on my arm, better to just throw me in ice bath to curtail the need! Now I get to go my family doctor about possible cellulitis. Maybe a take away could be before neurotically itching be sure to hibicleans the site, your hands, and clean out from underneath your nails. 😉

Itching cellulitis multiple sclerosis

Eriksgirl marked lines on the swelling/infection to track to see if it was spreading. A few hours later the infection had spread

Mar 102008
 

In Friday’s post I responded to a comment by “Anonymous” (Anonymous deleted the comment) with another comment questioning her knowledge of Lyme pathology. Following is part of her response (Anonymous deleted the full comment):

I know enough about Lyme. I have a close friend who claims to have “Chronic Lyme” but who I actually believe is probably suffering from either Munchausen Syndrome or hypochondria. The “dissenting research” to which you made reference has all been published by so-called “LLMDs”—the same people who stick patients on unending IV antibiotic regimens (in some cases killing them, after which, at autopsy, no sign whatsoever of Lyme Disease or coinfections is found) or prescribe quack treatments ranging from “magical lasers” (LMAO) to fad diets to herbs which, when scientifically tested, were shown to have no effect on people.

I don’t know Anonymous’ close friend so I certainly can’t speak to that specific situation. Either way I thought there are some things that can be discussed about this comment. On a side note Munchausen Syndrome and hypochondria are very different mental disorders that present very differently. Anonymous should consider looking over the DSM IV on those two issues; I’m sure the school library has a copy.

First, since Lyme was the point of comment, Lyme can be diagnosed clinically. Proceeding with antibiotic treatment with clinical signs is a reasonable course of action. Antibiotics do kill people, but that usually has more to do with an allergic reaction. An autopsy would not test for Lyme, but if the body was donated to a medical school that could be part of some research. There was no citation so nothing more to really comment on. As to the quack, or questionable treatments that certainly isn’t unique to Lyme. 😉 Certainly after many years of MVT I’m still having problems!

The bigger issue is the invisible nature of many problems. This invisibility issue affects many diseases; though MS and Lyme are noteworthy here. Anonymous’ comment about Munchausen Syndrome should hit home to many MS’ers who’ve heard the “but you look so good.” Taking a look again at the NMSS site: You can’t see fatigue, depression, cognitive issues, emotional issues, depression, headaches, burning, pain, numbness, itching, etc. Furthermore, there’s no test confirming you are having most of these problems; it is just your word. It appears that Anonymous is early in her MS journey, and maybe has not encountered the difficulty of symptoms that are unseen. Hopefully she will not have to. Regardless, I hope she did not slap the Munchausen Syndrome label on her friend for problems she could not see.

Jan 172007
 

In response to Gwen’s post my exacerbation pre-dated the holidays. I am just a little slow to get to posting about the exacerbation, etc. (the exacerbation pre-dated Thanksgiving, and just being the 5 of us at home probably doesn’t count as holiday stress – just regular stress ;-). In fact the Solu-Medrol was completed weeks before Christmas. I also agree that many exacerbations just go away by themselves, most within a couple of days. This was not the case with the hands, and was the exact same track that led to the really bad exacerbation (from which there is residual damage). I did not want to risk any additional damage to the hands, and for the record I was recently re-tested and no carpel tunnel (nor any other tunnel problems in the arms) that would be causing residual problems.

Secondarily, does the cause of a significant exacerbation (holiday stress, etc.) matter other than for academic purposes. Regardless of the time of year, and surrounding circumstances I will treat hand problems aggressively. Conversely, pain, itching, balance, fatigue, dizziness/vertigo, numbness elsewhere, etc. will not be treated aggressively – and probably not treated at all (other than the normal routines). I think everyone needs to have thresholds with MS for exacerbations that are tolerable, and exacerbations that are not tolerable that will be treated aggressively. Some people may find walking problems to be more serious than I do, and treat those aggressively.

I’m curious, where do you work that you get 6 weeks of paid vacation (and are they hiring!)? (I get 4 weeks, but that is above average in my experience)

Mar 032005
 

I got an email from a nurse wanting to ask some questions for an upcoming seminar. Here is my response that I emailed back. Hopefully I was coherent, I’m just really not in the mood to proof read.


  1. How old were you when you first had symptoms?

26

  • How long between first symptoms and diagnosis?It was about a year because the symptom went into remission, and I just wrote it off.
  • What was first symptom?It was numb feet, which I just wrote off as being part of my flat feet.
  • What symptoms do you now or have experienced? What is the most difficult to personally deal with?I have been in remission for a while. The most difficult exacerbation was the one where I lost almost all control of my hands. This was the exacerbation when I was diagnosed, and it didn’t respond immediately to Solu-Medrol treatment. I was very concerned that it was going to leave me crippled, and unable to work and provide for my family. Here are some of the other symptoms I have experienced:
    • Pain – burning and throbbing. It is usually in my legs or arms, but occasionally I have had the burning on my back Highest pain level was a 5 on the 10 point scale. None of it response to OTC NSAIDS
    • Itching – on my arms
    • Motor Control – this was in my hands and forearms
    • Numbness – hands and feet
    • Acute Dizziness and Vertigo
    • Loss of hearing – this happened half way in on my exacerbation when I was diagnosed. Almost deaf in my left ear, and very diminished ability in my right ear
    • Location Specific Essential Tremor – this has become less severe but is still present
    • Acute fatigue. This has happened a couple of times but not for a couple of months.
    • Depression. I attribute to either a lesion or the Rebif because I am not upset about the MS, and its progression anymore.
  • Do you converse with any other people with MS? What is the main focus with discussions?Yes. Those that communicate via email are typically those that are newly diagnosed, or their families, and have specific questions regarding their symptoms. The major interaction is through the blog where there are discussions regarding my symptoms, news items, or treatments on the horizon. Of course the atmosphere of my blog seems to be more of a support nature and so it is unusual that someone will disagree with me, which is too bad.
  • Describe your feelings with MS? ( This is my most important question, as I want to bring into the science of my presentation the humanistic perspective….beyond the body into the heart and spirit)Mostly the MS has fallen into the background and just part of everyday life. The exacerbations can be frustrating as can be taking the Rebif. I don’t really have an emotional response to MS any longer, I must have gotten my catharsis all out with the really large exacerbation.
  • What would be the most important piece of information you would like me to share at the seminar..There will be upwards to 40 medical professionals- nurses, therapists, social workers, and administrators and I will be inviting some staff from the MS Society.There seem to be two general responses to MS. There are those that take it in, make a few adjustments to their life, and just go on living. The others seem to think it is too much and never seem to cope with having the disease, regardless of the severity of the MS progression.

    I think the worst part of having MS is the unknown. Since the pathology is so individual even within the same type of MS (e.g. relapsing-remitting) that can breed a lot of stress. I think injecting a placebo would be helpful, just for the thought that “something” is being done to help.

  • If there are any other people or sources you know of to help me convey this perspective I would be most grateful. Any blog areas you know of Erik that may be helpful that I could tap into?There are other blogs that are listed on the right side of my blog, all of those people have been diagnosed with MS. You might also want to try the Usenet group alt.support.mult-sclerosis – though it has been a while since I have been there. I’ll also post these answers to my blog (http://blog.thesmithlife.com), maybe someone else will have some additional insight.
Sep 022004
 

I was hoping it was getting better but then I had a really bad day today with pain in the 3-4 realm and it was constant rather than intermittent. I’ve also had a lot of itching lately without any real explanation and not in places where I have had prior MS itching but since it moves around so frequently I don’t know what to blame. But when in doubt blame the MS (unless you’re cooking hot peppers). 😉

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!)

May 122004
 

I just got off the phone with me dr. as I write this (4:40 pm). I have had a rash of new symptoms for a couple of months now. Some of the new stuff was MS Pain (I will go into more detail later), Itching (I will go into more detail later), and very recently foot numbness and leg weakness. The later is what I called the Dr. about. I asked his personal recommendation at this point and he said to wait a week and follow up with him to see how I was doing – this is probably because he knows me aversion to solu-medrol because of the bad attitude it gives me. He said after a week if it hasn’t gotten better then he’d probably prescribe oral high-dose Decadron. He said most studies indicate that it is just as effective as Solu-Medrol. He said if that didn’t work than he would recommend proceeding with Novatrone to nip it in the bud. I really don’t like the prospect of that – and told him as such – but I really don’t think it will come to that. He also said that the side effects to Novatrone are much better than Solu-Medrol. I told him whatever is necessary it is OK to proceed with.

He also expressed concern that I have had a couple of exacerbations back to back while on the Rebif. He countered by saying that who know what they would have been like on nothing. He said he would be eager to see the new MRI’s come July to see if there has been a lot of activity and then deciding what to do then. I certainly want a drug that works now because now is the time to control the symptoms to prevent disability.

We also went on to discuss my Zoloft dosage because while it has helped a ton I am still a little sensitive at times. It is much less frequent, much less severe, and I am able to keep it hidden. I asked him what I should expect from the Zoloft. He said that I am on a very low introductory dosage and most people are on 100mg to 200mg so he bumped me to 100mg. He said that since I tolerated 50mg so well I shouldn’t see any ill effects in moving to 100mg. He also offered to have his staff call in a prescription but I said I have plenty to double-up on until our next appointment when we can evaluate how well it is working.