Anyone have both GBS & CMT or some other combo?

General General CMT Discussion
1

I got GBS from a flu shot. Symptoms started on 12/23/13 with difficulty walking straight and progressed over the next two days to double vision, vomiting, can’t walk at all…ER, admitted for stroke protocol. Determined no stroke, so discharged me. I asked what’s wrong with me and they said it was for my PCP and me to figure that out, but I’m not dying today. No mention of GBS or any treatment. Off to the neurologist - several. Many MRIs, LP, about 200 blood tests, EMGs - finally diagnosed with BGS to years later. Permanent nerve damage in left leg - 100% loss of temperature, pain and light touch. My thankful. I can walk. It could have been much worse. Then about six months later I started tripping. If GBS is a one trick pony, why am I getting worse? DNA test then showed CMT1B. Very late onset as I am 61. The thing is, the CMT symptoms are very mild in my right leg. But my left leg, already damaged by GBS, is going downhill fast. My neuro says the GBS could not have triggered the CMT to manifest, but I wonder. I’m getting a referral to Stanford - CMT Center of Excellence. I also have bulging discs at every level, and a tear in my lumber L4-5 so getting ablations from a different doc (pain mgmt) for that every 9 months which causes it’s own set of neuro issues. I’m hoping to get opinions from a doctor that can look at the whole picture instead of treating me in bits and pieces.

My questions:

  1. Does anyone out there have multiple neurological issues? If so, what’s your story.
  2. Regardless of the cause, was anyone left with damage to just one leg?
  3. Has anyone been to a CMT Center of Excellence and what was your experience.
2

I can’t answer yes to any of your questions, but I can say for those of us who manifest late in life there is usually a trauma to the body of some sort that is kinda like the last straw and then CMT progresses much quicker. I had been to neurologist 4 months before and had the electrical tests run and needed to go back on another weird thing where my eyes simply unfocused from each other. not a stroke or aneurysm but saw sent to neurologist asap and he decided that since I was there he did the electrical conduction tests and was absolutely shocked and how much worse my results were. he said this should happen in several years not 4 months.

That said, I broke my foot and couldn’t work my physical job for 3 months and what a night and day difference when I went back. couldn’t pick up a nut or bolt without dropping a few at a time.

1 Like