Vroberts129

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  • August 15, 2017 at 6:42 pm

    Relapse or Recovery; GBS or CIDP:
    I was diagnosed with GBS April 1, 2017 after being hit March 13th. I was diagnosed via symptoms and EMG analysis. I received 5 days of IVIG around April 3rd. That was my only IVIG treatment. There was no apparent change in my situation right away. Since May 1st I have been getting stronger in my upper arms and my legs. I also had double vision late and that has recovered. As I have gotten stronger, I seem to be more aware of a band of tightness around my upper arms, both arms. It is worse late in the day, better after sleeping. It seems to get worse, or else I am more sensitive to it as I get better. At times I fear I am relapsing. I am still very numb in my upper arms and my knees. I told my neurologist I wanted another IVIG treatment. He gave me another EMG instead saying my nerves were healing and were much better. My ankle reflexes and wrist reflexes are better. I still have no reflex at my knees. He said I did not need an IVIG treatment. I just dont know. I am wondering if I should get another opinion. My neurologist seems to be very knowledgeable about GBS. He told me he has two other patients currently……Any ideas? Thanks….

    August 15, 2017 at 9:36 am

    Schwann cells make myelin. They need VB12. I am jamming B12. I noticed my neurologist just ordered a B12 test for me. Since GBS partial recovery (I was attacked March 13, 2017), my knees are a wreck. Both knees feel like bone on bone. I had ragged menisci in both before, but nothing like the current pain. Feels like arthritic symptoms. Once I am up and moving they are better. I am really compensating on my right leg and hyper extending my right knee because my right quad muscle is so weak. Not good…..I plan to get knees MRIed soon. My insurance company is getting pissed…..best wishes for you….

    August 15, 2017 at 9:25 am

    I never had lumbar tap, only EMG. So I know in my case, no.

    August 9, 2017 at 9:02 am

    I have lost muscle mass in right quad and right triceps. Not sure if it is a result of GBS in March or use of statins since 2010. Can I rebuild it? What do you think? Neuro just ordered blood work:Rheumatoid Arthritis factor; Creatine Kinase (CK), MB Total; Protein Electro., S; Lyme IgG/IgM Ab;TSH;Vitamin B12;Antinuclear Antibodies Direct; Anti-dsDNA Antibodies.

    July 25, 2017 at 12:16 pm

    Hi Lisa: I have had a similar experience as you. I was diagnosed with the flu after having it on a boat for a week. The same day I got hit hard with pain in my arms and weakness in my arms and legs. I bounced from one hospital to another as they didn’t quite know what to do with me after testing for stroke, and more common neurological disorders. They suggested I may have GBS, but never tested me. After I was released I went to the neurologist that worked on my neck issues in 2014. He gave me the EMG and put me back in the hospital for IVG treatment. I am slowly getting better, but I have nerve pains in rings around both arms. It will get better and then worsen. I also can stimulate tingling slight pain in my lower legs by thumping my upper legs. My neurologist says I am much better. I am much more mobile. However, I discussed another IV therapy with him last week as I am never sure if the increasing ring pain in my arms means I am becoming more sensitive to the damage or if I am having a relapse with more damage occurring. It was the pain in my arms that was the worst at outset. I am considering another treatment even though I am obviously progressing as far as arm and leg strength. Best wishes…..Dan