What is it?

    • LWolf
      August 29, 2017 at 4:08 am

      Hello,

      Recently, I’ve been trying to figure out if I have CIDP. I went to one doctor at a Center of Excellence who said I was normal. Then, I went to a doctor was suggested to me by a forum member, who diagnosed me with this disorder. I had an EMG that suggested axonal and demyelinating polyneuropathy. He wanted me to start plasmapheresis, and I felt as though I needed a second opinion for such a life change, and after a failed attempt at IVIG.

      Yesterday, I got an EMG by the doctor at a Center of Excellence (second opinion). Her EMG said all of my nerves were totally normal! She basically told me I was fine and told me to live my life and not see her any more. That was it!

      Now, to say I’m confused is an understatement. I had GBS 20 years ago. I didn’t expect a lot of damage, but something, considering my symptoms.

      Does anyone have any input as to why these EMGs were so vastly different?

      Here’s a rundown of my symptoms for reference:

      Urinary incontinence
      Edema
      Warm water sensation running down my legs
      Last two fingers on my hands go numb and tingling when I lean on them for a while/ in my sleep
      “Zaps” throughout my legs randomly
      “Crawling” sensation throughout body
      Tingling in feet occasionally

      That’s all I can remember for right now, but if anyone can help, I’d appreciate it!

      Liam

    • LWolf
      August 29, 2017 at 4:29 am

      I should add I have muscle twitches, low blood pressure and high pulse, no reflexes at all. Also, very serious fatigue.

    • jk
      August 29, 2017 at 12:21 pm

      Please explain more details regarding ‘..after a failed attempt at IVIG.’

    • GH
      August 30, 2017 at 12:30 am

      I don’t see how your nerves can be normal if you have no knee reflex. That needs explaining by a neurologist.

    • LWolf
      August 30, 2017 at 7:40 am

      Hi everyone,

      My “failed attempt at IVIG” was when the doctor suggested by a forum member started me on home IVIG [Octagam] and my blood pressure tanked the first two days and we decided to stop. It was something like 70/45ish at one point. I was not feeling too well!

      Anyway, that’s why the doctor suggested by a forum member suggested plasmapheresis. It has worked for me in the past, the first time I had GBS.

      I also do not understand how I have zero reflexes anywhere and still am considered “normal”. I am going to be seeking a third opinion.

      Thanks,
      Liam

    • LWolf
      August 30, 2017 at 7:40 am

      Hi everyone,

      My “failed attempt at IVIG” was when the doctor suggested by a forum member started me on home IVIG [Octagam] and my blood pressure tanked the first two days and we decided to stop. It was something like 70/45ish at one point. I was not feeling too well!

      Anyway, that’s why the doctor suggested by a forum member suggested plasmapheresis. It has worked for me in the past, the first time I had GBS.

      I also do not understand how I have zero reflexes anywhere and still am considered “normal”. I am going to be seeking a third opinion.

      Thanks,
      Liam

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