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.April 16, 2020 at 1:14 pm
It’s funny you should mention it. I stopped using mine about a month ago. I was diagnosed January 2017 and started using the braces in 2019. I’ve had some therapy and had done some exercises to help with the drop foot. Not sure if the therapy helped or the Gamunex infusions are helping, but I stopped using my braces to let my feet and ankle get some use and exercise. My balance has gotten better.
Good luck, hope you’re feeling better.April 5, 2020 at 11:03 am
I have never had any kind of implant surgery.
Ive never nailed down the cause of my CIDP. My suspicions are either the Lyme I contracted, the over use of antibiotics to treat the Lyme, or very possibly the one and only flu shot I’ve ever gotten, or the combination of all.
Everyone’s CIDP story is different. The end result is a crippling disease we have to combat. The cause is anything that triggers your immune system to go into overdrive mode and attack your body.
Early on in my diagnosis I lost a lot of sleep picking my brain trying to find the answers to the cause of my CIDP, it’s hard not to think about it when you’re out of work with nothing to do but think.
Try to focus on getting your self well. You will get a lot of support and information here. I know it’s hard to, but stay positive and focus on getting yourself better. 👍March 11, 2020 at 4:15 pm
Hey Chirpy Birdy,
I understand there is a 3 year stature of limitations, from the time you receive the vaccine/flu shot until you file suit. I was told I’m not able to file a claim against the Vaccine Injury Compensation Program. I got the flu shot in late 2013, and didn’t suspect the flu shot until I joined the forum this past year. Now it all makes sense, but a day late and a dollar short. 🙁February 23, 2020 at 10:28 am
When I was taking Gabapentin I developed skin rashes, dry patches, though it’s not listed as a side effect when I researched this med.December 27, 2019 at 2:56 pm
I started Gamunex in 2017. Did a regimen for 18 months. Same as you’re experiencing, the neuropathy just kept getting worse. When I was diagnosed with Lyme for the umpteenth time, my neurologist suggested taking a break from the infusions. I agreed, not seeing any season not to. After 8 months of Lyme treatments my CIDP got progressively worse. Not just the nerve damage, I got weak, legs, hands & arms.
My neurologist never had a plan B. None of us as patients should have to bring new ideas to the table, but if we wait for these doctors to make plans, you’ll be waiting till hell freezes over.December 16, 2019 at 8:50 am
My neurologist just increased my Gamunex dosage from 45 grams to 80. I’m hoping the increase does the trick.
Been on Gamunex on & off for 2 years, I can say I’ve seen much relief, maybe the increased dosage will help.
If after a couple months or so I see no improvement I’ll suggest the Cellcept. I’m on Prednisone, that doesn’t seem to do anything.
Rob, We went to the caribbean back in July, had planned to do some scuba diving with my son in Grand Cayman, I barely left the hotel room. Not realizing, I had suffered a pulmonary embolism shortly before leaving for vacation. It’s a good thing I didn’t push it and dive, I probably would have had serious issues.
I’m probably farther along with CIDP, enjoy your vacation, but take it slow. The heat had effected me greatly.