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paresthesia question

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    paresthesia question

    Ok, so I have gone through my treatments for transverse myelitis. They told me that after 6 months I would know what if any damage was permanent. Most of my pain in my arm was gone with in a week of finishing the steroids down to an ache, the tingling in my hand stayed.

    (There were a lot of side effects from the steroids. Finally determined that all problems that were added with my eyes, were all related to the steroids)

    Now 3 months later my pain is back, I have been completely exhausted for weeks I can never get enough sleep. My brain is not functioning properly (probably due to being so tired) and now the tingling in my index finger has changed from tingling to the burning sensation you get if you tie something around a finger too tight for too long. The other fingers that have tingling still just tingling.

    Anyone have this happen before?

    I go back to my neurologist on Monday, my GP is sending me because the pain came back. (not sure why he will just tell me there is nothing he can do)

    Originally posted by Chellebelle View Post
    Now 3 months later my pain is back [snip] Anyone have this happen before?
    Yes. It sounds like you're having a relapse, which can be a regular occurrence for anyone who has an inflammatory disease, including multiple sclerosis (MS) and neuromyelitis optica (NMO), particularly in someone who isn't taking some kind of preventive medication.

    Steroids only suppress inflammation from one episode. They don't prevent further occurrences of inflammation. So once an inflammatory condition shows that it's going to be recurrent, the person must be on some kind of preventative medication to prevent further flare-ups and damage and to try to prevent the need for steroids, which cause their own damage.

    Originally posted by Chellebelle View Post
    I go back to my neurologist on Monday, my GP is sending me because the pain came back. (not sure why he will just tell me there is nothing he can do)
    To the contrary. There is a lot your neuro can and MUST do now that you're having another episode.

    First, your neuro should do more testing and take steps now to determine whether your condition represents MS or NMO (or something else, but the first two are the most obvious, and some of the other possibilities may have already been ruled out the first time around). The difference in diagnosis is critical, because the conditions have a different mode of action and are treated differently. And in NMO especially, rapid, correct diagnosis can be critical.

    If your neuro doesn't start working on the differential diagnosis immediately, immediately go find another neuro is knowledgeable about NMO. Even 10 years after the Mayo Clinic discovered the differences between MS and NMO, there are still neurologists who aren't familiar enough with NMO and don't know what to do about it.

    Once the differential diagnosis is made, it should be determined whether you should be put on steroids again. This is one of those important differences between MS and NMO treatment. NMO works differently than MS, and suppression of inflammation can be critical. In MS, steroids can be optional. In NMO, they're usually necessary. So that decision needs to be made quickly.

    Second, whatever condition you're found to have, you'll need to get on a preventive medication of the kind appropriate for the disease you're determined to have to try to prevent recurrences. Again, in NMO that's absolutely crucial, and the sooner the better. In MS, there's a little more leeway in when a medication can be started.

    Third, depending on what condition you're found to have, your neuro might put you on a medication to try to help with the pain and tingling.

    So that's two things your neuro MUST begin to do at your appointment on Monday, and a symptom treatment that's optional.

    Here's a general and good guideline. If there's a possibility that the condition is NMO and not MS, it's better to be proactive and treat with steroids to prevent further damage. Again, that's not true for MS. But steroid treatment isn't inappropriate for an MS flare, either, particularly if the person isn't on a preventative medication. But in this case, the guideline is to assume the worst (NMO) and treat based on the severity of the possibility.

    As the patient, you have a critical role in participating actively in your treatment. So please make sure you get what you need from your neuro on Monday or be prepared to find another neuro quickly, then do it if you need to.

    It may not be an easy appointment for you on Monday, so I'm sending extra good thoughts your way.


      everything I wanted to say what is said by jreagan ( and much better than I would have). I wish you luck on Monday.
      MS World
      PPMS DX 2001



        Re: NMO treatment.

        Hello jreagan,

        The recommendation of the NMO research community is (and has been for some time) that any NMO attack (as evidenced by clinical neuro exam and/or diagnostic testing and imaging) be treated as emergent. The standard protocol is IV SoluMedrol (usually for five days), followed by plasmapheresis (five to seven exchanges over a period of ten to fourteen days) if the patient is refractory. I know of no responsible NMO clinician who would ever decline to use IV steroids in the event of a true attack/relapse. This protocol is used for the treatment of relapsing Transverse Myelitis as well.

        I belong to and co admin a large NMO support group, and in just the period of three years, we've lost 22 members to acute brain stem attacks that compromised the respiratory system, causing respiratory failure. All of them (with the exception of one) were on preventative treatments and received immediate care for their attacks. Unfortunately, none of the currently used treatments are guaranteed to prevent relapse, rather the hope is to extend the amount of time in between relapses and to mitigate the severity if and when a relapse occurs.

        The good news is that it's not all doom and gloom in the NMO patient population these days. Thanks to new testing methods for the NMO IgG (Anti-Aquporin-4 Antibody) and other diagnostic improvements, patients can be diagnosed much earlier in their disease course than previously. Currently most neurologists are using either the ELISA or CBA testing method, but there is a new OAP (orthogonal array of particles) ELISA that has been developed and is more accurate. I am not sure that they are using it yet, as the paper is very recent. There are also new promising treatments in the pipeline that are currently being trialed.

        Grace (NMO+ since 2005)


          After Appointments

          I saw a neuro-ophthalmologist and she said that I do not have NMO, They cleared me of that previously. They have done a brain and cervical MRI both of which show no signs of MS Lesions.

          With the pain coming back my primary wants me to be seen by a specialist at the same teaching hospital as the neuro-ophthalmologist, however they have to review my case and see if they will take me . In the meantime I have been sent back to my regular neurologist because my pcp just has no idea. The neuro I saw Monday said this:

          He doesn't know, he agrees now that the specialist said the eye problems were due to the steroids (although he argued with me before that they weren't) He basically didn't want to address the pain coming back at all. He asked me the steroids helped before I said yes. They took away the pain till all that was left was minor tingling in the fingers.

          I told him I would not take the steroids again though because of the side effects that I had with the first course. His response was as if he were ignoring me completely and said "no, no we can't do the solumedrol again it hasn't been long enough since the last time" He then went on to say that while things are showing up negative it doesn't mean they will stay that way. and that they call it practicing medicine for a reason. (I know that this was probably meant to be reassuring but....)

          I explained to him that I am constantly tired now and that is seriously troubling me, he seems to think the 2 are not connected and wants me to have a sleep study. I am not sure what this will show him. I thought sleep studies were for people with sleep apnea or other conditions along those lines.

          I did not have the sleeping issues until after the problems started the first time. I am not sure why I am the only one to thing there must be a correlation. I understand that my loss of concentration is most likely due to being exhausted but I don't think that this is all caused by unrelated things.

          I just don't know what I should do at this point. It seems to me like everything is at a stand still and I don't know if I should be looking for a new doctor or just hanging in there.

          Things are getting bad for me at work. I keep forgetting things, It is hard for me to stay focused. I am fighting to stay awake most days. When I get home from work I am barely there for my kids. I really am not happy with this. I have no energy. I can fall asleep just about anywhere.

          There are many symptoms that I have been having for the last 6 months but when I try to ask if any could be related I just get the brush off. I know there has to be an answer somewhere.

          Sorry for venting I am just trying to find out what is going on so that I can fix it. Any recommendations would be appreciated.