Mayo Dr. said GBS a year ago/but gettting worse

    • May 3, 2017 at 8:51 pm

      Hello everyone:
      I came down with the stinging hands/feet followed by left side weakness that then became bilateral. Work for a large university and had a zillion tests/nothing but mildiy elevated CSF. Three admits in one month then they gave up and although I developed more symptoms; jaw weakness, arm weakness, spasms, fasiculations, etc. As the months went by I had a resident communicate with me that could not get me into the clinic who offered Ivig twice the attending would not let him administer. When I saw several more neuro’s over the next year with no dx and no help. Was sent to counselling. Duh, he found nothing.
      I now have numbness up through my chest esp. in my feet it is increasing. Burning pain all over and now…sharp pain on top of all of it. I went to Mayo last week, had the sweat test and EMG and blood work. Nothing. Dr. thinks I had GBS and should have had treatment, however I made the mistake of telling him my walking improved, which is does during the many remissions I have had. I told him each relapse is worse than the last which he seemed to miss. He put in the notes I had improved 70″ since onset, which is not the case. I meant only one area.
      My question is has anyone had a GBS diagnosis with nothing on an EMG, skin punch, tons of blood work? Could he be right and this be residual GBS? Then why would I be worse than better? I mean he said I did NOT have CIDP or MS and this was his best guess.
      It does not make sense to me. I get better very briefly than worse. Overall much worse than when I started.
      Any feedback, please, would be appreciated so much.

    • GH
      May 4, 2017 at 12:49 pm

      Neuro diagnosis is difficult, but it seems to me you should have received IvIg on the basis of your CSF test, even if it wasn’t especially high. The problem is that IvIg is a scarce resource and expensive, so it has to be rationed.

      Why is it not considered to be CIDP?

      • May 5, 2017 at 12:42 pm

        GH, thank you for your reply. As to why not CIDP, I assume it was because my blood work was negative. I don’t really know enough about diagnosing CIDP although I have read quite a bit about it.
        My concern is that he missed it, and I have no follow up with him unless I “become worse or have another incident”. I am already worse than I was at the beginning however.
        I have a Cleveland Clinic resident who is still working with me however I don’t believe she has the experience of the Mayo doctor. I just don’t know what to do at this point.

      • May 5, 2017 at 12:51 pm

        jk, thank you for your post. I am so discouraged, I have tried for a year to keep working so I could have the insurance to get help, seemingly to no avail. It sure does sound like CIDP however. I wish I understood why he believes it is NOT CIDP; is it possible to have no clear symptoms (reduced reflexes, neg. blood work, etc) and still have CIDP?
        I appreciated your feedback!

    • jk
      May 4, 2017 at 7:18 pm

      I also went to Mayo Clinic. A long time ago. One of the many doctors I saw, in fact, the one that mattered, stated “let’s give you IVIG, if you respond positively, then we have our answer.”

      Times have changed since then. The major roadblock to getting IVIG now is meeting whatever criteria the insurance company that covers you has laid down. Your attending physician surely has valid reasons for not allowing the treatment.

      So, go forth and find a doctor who will authorize some IVIG for you.

      GH summed it up. Getting an accurate & correctneurplogical diagnosis is often difficult. Do your own web search for ‘standard criteria to diagnose cidp’ or, sign up for a free account at medscape and read all about it.

      An article by Dr. Lewis updated in 2016. The article leads off with this: “CIDP typically starts insidiously and evolves slowly, in either a slowly progressive or a relapsing manner, with partial or complete recovery between recurrences; periods of worsening and improvement usually last weeks or months. Most experts consider the necessary duration of symptoms to be greater than 8 weeks for the diagnosis of CIDP to be made.”

    • jk
      May 5, 2017 at 6:32 pm

      Cleveland Clinic is one of the several major Medical Centers I have been to. It was the head of the Neurology Department of Cleveland Clinic, at that time, who stated “No, I don’t think you have CIDP.”

      As for if you have CIDP or not, the doctors have to sort that out. Read the Dr Lewis article for a better understanding of the other conditions to consider and rule out. There are many.

      Call him and ask why he thinks not. Better yet, collect all the office notes. They belong to you.