Reply To: Have you relapsed and recovered?

September 14, 2020 at 12:39 pm

Hello Sandra. So sorry to hear of your relapse.
I have been reading the stories on this site since my first onset Oct 2016, but this is my first post. I have been contemplating posting my story for quite a while & I will do it in the near future as we all seem to have so much in common, yet all so different. I am a 64 year old male and was 60 at the first onset.

Early Oct 2016, severe numbness and uncoordination, went to GP, then 10 days later went to ER as I was going downhill fast. They figured I had GBS since I had a flu shot 10 days earlier. Received IVIG treatments then sent home.

Early Nov 2016, relapse. I knew it was hitting me hard again, so back to ER I go. Gave me plasmapherisis then loaded up again on IVIG. So here is my first relapse.

Late Nov 2016, relapse. This time I was in San Diego and my daughter is a physician at Scripps-Mercy so she hauls me in. This time I’m in for close to 4 weeks. GBS does not relapse like this, plus my symptoms were totally peripheral (hands, arms, legs & feet plus I could not walk nor stand on my own) so a ton of tests and CIDP is their diagnosis.

My wife sets me up at the Center of Excellence at Cedar-Sinai in Los Angeles. I stay on IVIG for another 4 months at home. The neuro doctor removes me from IVIG treatments for almost a year.

May of 2017 I feel really bad. Another relapse. Numbness, burning, trouble walking etc. So back on IVIG again every 3 weeks. I am still receiving them. Now though every 6 weeks.

I don’t know if any of this helps you Sandra. But as a (good) side note: I am in not too bad a shape. Especially if you look at me. I drive, can ride a dirt bike, can walk a couple miles and look fairly normal to most folks. Except for the occasional “drunken stagger” you wouldn’t know I am ill. But I will say that my hands don’t work properly, they are extremely numb and my feet are the same way. I have a lot of facial, eye & tongue numbness as well. The head & facial issue baffles my neuro doctor at Scripps as it does not “fit the criteria” of CIDP.

I wish you and everyone else here all the best. One of my best mental treatments is to keep myself busy. It helps a lot. Keeps my mind occupied and off the CIDP issue.

Take care everyone. And Jim thanks for all you do for this site and the folks posting.

Acton, CA