October 11, 2022 at 4:33 am
Its not that you won’t get it back, you’ll have to start all over again. You can’t stop, why would you do that? I tried spacing out my infusions from two days every three weeks to two days every four weeks. I lost all my gains in health. Now I’m back to the three week schedule. Stay with it, it may be a life long thing, it beats being a cripple.June 14, 2022 at 4:16 am
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.June 6, 2022 at 4:00 am
Keep me posted, am interestedMay 14, 2022 at 7:47 am
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.October 4, 2021 at 1:44 pm
In the past, before I’d gotten my CIDP under control, I’ve had strange dreams, and restless leg. Often I would cry out in my sleep. But I always associated it with my pain meds. I also had a strange sensation where my nerves seemed charged, almost like my nerves were short-circuiting, which would wake me out of a dead sleep. Some times it would effect my legs, sometimes my arms, or torso, or all of the above. It was very hard to describe the sensation, the only way I could describe it was absolute torture.September 27, 2021 at 4:51 am
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.😢May 14, 2021 at 7:39 am
I’m not exactly sure what the low hematocrit levels indicate, myself I become anemic when I receive my infusion. I have to remember to take iron vitamins before and during my infusion treatments.April 8, 2021 at 2:55 pm
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.March 7, 2021 at 5:36 pm
🖕March 7, 2021 at 8:17 am
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.January 8, 2021 at 5:05 pm
The tightness in the calves I’ve had for many years, one of many symptoms of my CIDP. Daily pt will alleviate the problem. I had partial paralysis in my legs and feet for the past few years, so for a while I couldn’t do much about it, now that I’ve regained my strength I’ve seen much improvement with the tightness.December 2, 2020 at 6:55 am
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 🍀👍September 14, 2020 at 4:09 pm
Any doctor that tells you you’re too old for nerve regeneration is a bad doctor. I’m 62 and my nerve are repairing themselves, with some help of course. Sounds like you need a new doctor. Your health is too important to waste time with bad doctors. The quicker the better, you need to find a better, supportive and more experienced doctor. Don’t give up just because your doctor has.September 13, 2020 at 12:09 pm
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.September 2, 2020 at 6:51 am
At my lowest point dealing with CIDP my feet were completely paralyzed. I couldn’t move them, I couldn’t feel anything if you touched them and they couldn’t feel temperatures (hot or cold). After 3 years of Gamunex infusions and the more recent CET treatments (combination electoranalgesia therapy) is a neuropathy pain management program. I am at the point now where I’m starting to feel almost normal again. After being out of work for a year, I’m making arrangements to return to work. 👍
Keep up with your treatments and don’t loose faith. It takes a while but you will get better.