Advice!

This topic contains 7 replies, has 3 voices, and was last updated by  Zeinab 2 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #116216

    Zeinab
    Participant

    Hello everyone,

    I am seeking some advice regarding neurologist.I am struggling with getting a definitive diagnose for my symptoms. the last neurologist told me “if he seperated some of my symptoms – numbness, tingling, pricking, pain, electric shocks, areflexia- he will say it’s ALS, but if he put all my symptoms together then I have something that he doesn’t know what it is. His statement was SHOCKING, to say the least. I didn’t know what to say or ask, but I mentioned CIDP and he immediately dismissed what I said and moved on to trying to treat me for ALS. I politely refused whatever meds is given to ALS patients and asked him for prednisone, so he prescribed 60mg prednisone daily for 6 weeks and asked to see me then. I have been on the pred. for 2 weeks now and I am seeing little impvrovement in some areas of strength but the side effects are wearing me out.

    Long story short, I lost trust in this neuro’s ability to reach a diagnose. there is another neuro at the same practice who is familiar with CIDP, should I ask to see him? would that create a conflict? should I ask to see a different neuro at a differernt practice who is familiar with CIDP? ……. but with a new neuro/practice comes new testing and the whole nine yards… which I am seriously tired of being pocked and proded to tell me all blood work and images are normal…

    your inputs are greatly appreciated!

    #116217

    Mark Robichek
    Participant

    Hello, Zeinab.

    I had to go through 2 neurologists before zeroing in on neurologist #3, my first neurologist to be affiliated with a GBD/CIDP Center of Excellence. Finally, I found one who diagnosed me properly and got me started on the right treatments that have now got me feeling “almost cured”.

    To address your question, NO, it is absolutely NOT a conflict of interest to seek another neurologist, whether at the same practice or at a different one.

    For me, the solutions were: 1) Get a proper diagnosis; 2) Fiddle around with my IVIG dosage; and 3) Add Prednisone to the mix.

    Good luck!

    #116218

    Zeinab
    Participant

    Thank you Mark for your advice. This neurologist is my 2nd one who couldn’t give a definitive diagnosis, which made me very frustrated. I understand that it is not easy to reach a diagnose when ones have the most weird symptoms, but I was under the impression that doctors are suppose to go the extra mile to help their patients and not just give confusing statements, guess I was mistaken!!😔

    #116229

    GH
    Participant

    I don’t advise you to ask for particular prescriptions, but I do advise you to try to find a neurologist who has an open mind about the diagnosis and in whom you have confidence. When the neurologist rules out a diagnosis, he or she should be able to xplain why. It isn’t enough to just dismiss a possible diagnosis as unlikely.

    Have you had the spinal fluid test?

    #116232

    Zeinab
    Participant

    GH,

    I did have a spinal tap and to be honest with you the results were never discused with me but I assume they were negative. however, I know sometimes a negative spinal tap is possible; in addition, I was on prednisone for 2 months prior to the spinal tap. so I am wondering if the resluts were affected due to the prednisone.

    #116233

    GH
    Participant

    If the neurologist doesn’t offer information about a test, there is nothing wrong with asking. A patient has the right to know such things. I wouldn’t go too far with it though. The neurologist is the presumed to be competent to interpret the result, but he or she should tell you if the level is normal, or high. Sometimes the test can be inconclusive.

    In my case, I just asked my neurologist if the test was consistent with the diagnosis (of GBS). It was and that was enough for me.

    #116239

    Zeinab
    Participant

    Questions to you all about the CAR protein results:
    1. Is it total protein elevation result or are we talking about one specific protein in the CSF? If one specific protein, which one??

    2. How elevated does the total has to be?

    #116240

    Zeinab
    Participant

    That is supposed to be CSF NOT CAR😁

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