Reply To: Have you relapsed and recovered?

September 21, 2020 at 2:30 pm

Hello Sandra & sorry for the late reply. Not sure if this will help out but here is more to my story.
Oct 2016; I woke up one morning and my hands were numb. I had no idea what was up. I immediately thought stroke so I called my GP. He got me in right away and sent me out for a CT scan. No stroke shown. My GP had sent me to a neuro doctor and he did a preliminary and asked me to come back in a week if no improvement.
I am home and over the next 3-4 days my hands were not working properly and feet getting numb.
I could not fasten my pants, was stumbling around like a drunk and obviously concerned. I had taken myself off from driving, so I was getting a ride to the office.
After about the 5th day at work I almost fell over and head/face was getting extremely numb as well. I figured there was something serious going on so I had an employee take me to ER. My physical condition was deteriorating rapidly. Crazy fast.
This was the first of 3 ER trips.
So, where I’m going with this is I seriously believe me heading to the doctor so early was a tremendous benefit in my outcome and current state. Of course I did not know this at the time as I had no idea what was going on. I got lucky and made a good decision.
I am still on IVIG. Down from 90 grams every 3-weeks, to 60 grams every 6-weeks. How is it working out? The jury is still out on that really. Mornings are rough as all my tendons are stiff as a board, feet, lower legs, hands, forearms, face, eyes & tongue are numb and burning. After 600mg Gabapentin ( I take 1500mg daily) and I walk & stretch a bit I loosen up.

I really hope your body settles down. I am still waiting for that. I told nuero that I can live with what I have. Please don’t let things go further down hill. I have my fingers crossed.

Jim mentions above about going to a center of excellence. I go the Cedar-Sanai Center of Excellence in Los Angeles. I also still see my local neuro doctor. I was glad to go see the Cedar doctor for a 2nd & well educated opinion. In truth both neuro doctors did the same treatments. But it is sure good to know that my local neuro doctor and myself did the right things.

I may still put my whole story in it’s own post here soon as it’s kind of long and has some screwy twists prior to the onset CIDP.
Good luck to all. I think we all kind of need it.