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Living with Polyneuropathy CIDP, GBS, & CMT

Neurologist in Bay area, California: for GBS


#1

Hello all

I am interested to get a second opinion for my diagnosis of GBS, normal EMG/ NCV except for one distal nerve with chronic nerve damage.

Any suggestions for a neurologist?

We have Stanford and UCSF , academic institutions in this area.

Thanks
Hemal


#2

How were you diagnosed? Lumbar puncture or symptoms?


#3

Sorry to respond s late. I was taking a break with family.
Diagnosis on basis of symptoms alone.

I had been having nerve pain [ over 3 mo, that I thought was plantar fascitis] then I developed foot drop on left, later on right over 6 weeks and then acutely [ in 2 days] lost ability to balance and got admitted for gbs and ivig. I am showing improvement: able to walk short distance without walker. Fatigue/ lack of endurance is my biggest prob and newly developed hand muscle weakness[ can’t lift heavy things and need to rest my hand after use]

My neurologist said that my emg/ mcv was normal except for the one nerve and toe extensors paralysis.

My symptom progression[ slow over 6 weeks] is like CIDP but since my emg / mcv is normal it is GBS. It may be normal since demyelination was proximal per neurologist but improvement post ivig is the main reason for my GBS diagnosis.

I read your story, it must have been hard. I hope you are doing better.


#4

I have good days and bad days. Mostly I am bothered by my own expectations. I want to be the me before and I am not yet. The twitches in my mind means I am not healed. I keep thinking if I were healed they would stop. I worry if they continue it means CIDP or something maybe. I had soneone explain it to me yesterday who had GBS. He said it takes a strong signal from our brain to build up to make the jump from the gap to muscle since ours was damaged it has a interruption and it causes the twitch. I hope that is correct it made me feel a littke better. I go back in few weeks to my neuromuscular neurologist to see if my tests are still good. Hopefully this is just another part of GBS and I will get better as a few more no ths go by. I am at 13 months now. Wish I were at 2yrs and finished with all of it. Best wishes to you and a happy new year!


#5

UCSF would probably be the best place to go.


#6

Hi
I went to stanford and they diagnosed with Transverse myelitis based o my history, recovery and MRI findings.
How are you doing?
Just started PT and omg, I have been sleeping for the last 1 week post PT!!!
Hemal


#7

Wow. Transverse myelitis. Someone told me that may have been what I had and not gbs miller fisher but I don’t thinks so my MRI was normal. I hope the PT works and th make 100 percent improvement. How is your twitching muscles? Mine have almost stopped but I feel little squeezes and zaps. Good luck.