I’ve never stopped completely, but a few months back my doctor reduced my medication by half, because my kidneys function was reducing because I was doing so much Gamunex, that sent me into a tailspin.  I lost years of progress. Funny thing is, previously the CIDP mostly attacked my feet and legs, now my hands are being effected to the point where I don’t have the strength to open a bottle of water or turn the key to open my front door.

That’s where my CIDP started, undiagnosed/untreated Lyme caused all my problems. Find a Lyme specialist and combat the Lyme problem before moving forward.

I had similar symptoms years ago. I/It was much worse than it is now. Along with CIDP, I had and was battling with Lyme, I had 3 different types of tick born bacteria. Have you been tested for Lyme? Go to a Lyme specialist.

I’m not sure if it relates to the Covid shot, but I did receive the Pfizer shots.

I originally suspected that my CIDP was caused by Lyme which I was treated for.

I didn’t see any progress with my CIDP until after I was treated for Lyme, which I found out that I had 3 different types of tick borne diseases. After a long battle with Lyme, then I seem to make progress with my CIDP. It may be a coincidence but, I’ve also had a CIDP relapse. So now I have 2 suspects.

I suppose I should start by seeing my Lyme doctor and get tested for more Lyme type infections. If my Lyme tests come back negative, then I’ll have to suspect the Covid shot.
Im beginning to think God hates me.😢

It may be that your doc needs to increase your dosage. Your story sounds a lot like mine years back. I was on 450 ml. every 4 weeks. No improvement. I was nearly crippled. Then my doc doubled the dosage to 900 ml every 3 weeks. Now I’m back on feet and back to work after being out on disability for over year.

My doctor said to get it, not the new Johnson and Johnson one, because it has the live culture. He said get the 1st type, Pfizer, the two part one.
I haven’t gotten any yet, I’m a little concerned, but the issues that arise later from getting the virus, not during having the virus, that’s bad enough, there’s now evidence that people are getting blood clots and aneurysms. A guy at work died of an aneurysm a few weeks after having the corona virus. I guess I’m getting the vaccine.

JD.
I never had facial/head numbness. Along with the typical foot & leg, hand weakness and numbness, the only non typical symptoms I’ve experienced in my 4 years of CIDP, which in the past six months or so had begun to subside was trouble /labored breathing. This disturbing symptom was mostly present in the mornings. This is a rare symptom of CIDP but not unheard of.

Since my neurologist increased my Gamunex dosage from 45 grams to 90 grams for two consecutive days every three weeks my symptoms have begun to subside. No more breathing issues, the numbness is decreasing and my strength is starting to return.
I’m not a doctor but your facial issues may be a side effect of the other medications, or a combination of meds.
Hang in there and good luck 🍀👍

Oh, absolutely. Early on my Gamunex C wasn’t even working. I went a year and a half of 45 ml. And saw no improvement. Then I stopped and was treated for Lyme for 8 months. Finally the Lyme was cured, but the CIDP was worse than ever, to the point where I walked (barely) with a cane. I almost ended up in a wheelchair it got so bad. Finally my neurologist decided to step things up and increased the dosage of Gamunex. To 90 ml. Recently I had a big setback when I ran out of pain meds for 5 days. I went through Detox and that stressed me out so bad it took back the gains I’ve experienced where I felt like I did two months ago. I hope to regain my health, hopefully within 6 months. Not sure if my story qualifies as a relapse but definitely a setback.