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Living with Polyneuropathy CIDP, GBS, & CMT

Suffering- I know you all care


#1

Hi All,

It’s been a frustrating few weeks, and today has been particularly bad. Never have your symptoms worsen near a holiday!!!

Backstory- diagnosed with likely GBS 4 years ago. Very mild, no treatment, minor nerve damage. Then symptoms came back. Two docs said no CIDP but had no explanation for my continuing worsening symptoms. Doc 3 diagnosed CIDP. I’ve thus been doing IVIG for 3 years plus a couple short rounds of predisone for flare ups. I’ve been pretty stable and live a normal life with numb feet. Doc 3 (at a major big city teaching hospital) left job in March. I made an appointment with another doc there. Also a professor, over 40 years experience and published papers. In the meantime, symptoms started on a trip west three weeks ago. I had my scheduled IVIG. No improvement. I had my first appointment with new doc. He does not accept the CIDP diagnosis so we’re starting again from square one, which is fine- I wanted to a fresh look. But my symptoms are now through the roof. He did not recommend prednisone, which has always seemed to help settle things down. Yesterday I was at wits end so out of desperation I took a first 20 mg dose, and planned a two week weaning off as I did with prior doc. Today (Monday) I called office. Phones were down but I finally heard back- doc is out of country and on-call doc won’t be in until next week to renew gabapebtin (which I haven’t needed for four years). They said go to the ER. I felt a little better a couple hours after the prednisone but it’s back with a vengeance. My GP referred me back to neurology.

What do you do when there’s no relief? I’m not ready for ER, I’m just in a lot of pain, the most since my first episode four years ago. Thanks so much for your support. I know so many out there are suffering so much more.


#2

Hello, Jeanne. I really feel for you and hope that you get some relief very soon. Just know that people care and that you are not alone.


#3

Sweetie, I was just diagnosed with CIDP in April. I took the loading doses of IVIG in early June, went to work for two days, and the severe headaches returned. It is now going on 3 weeks with little let up. I had rebound headaches, and of course the IVIG has been canceled, for now. Stressed out about returning to work. Thankful that a God above loves me and has seen me through so far, and am thankful for my husband and son, and friends, as well.


#4

Jeanne - not acceptable that someone can’t at least call in some Gabapentin for you. I hope you have a heartfelt conversation with the doctor when he does return, and I also hope you find a new GP - yours should at least give you that medicine. I’m the spouse, not the sufferer, and I get so angry at some of the experiences I read about on here. I hope you are able to get some relief and get thru until you can get help. The medical community can be incredibly callous, especially when there is no actively involved family member to “be the bad guy”. And don’t blast me for this suggestion if you disagree, but when my husband can’t get relief, he drinks - probably too much, but sometimes relief for pain is more important than monitoring alcohol consumption. Maybe it won’t help everyone, but it does help him some days (not always). My thoughts and prayers are with you.


#5

It’s been months, I know. I had another IVIG and increased the prednisone. Weaned off by September. I’ve been ok since but I can feel the familiar ol’ numbness starting in my face and hands, and the squeezing and pain in my feet. New doc has taken me off IVIG and wants me on prednisone, since it works for me. I’m just tracking my symptoms while I decide where to head next. I’ve been in the care of a functional doc as well - they try to get at the heart of autoimmune disease through healing the gut and adjusting the diet. I’m still waiting but other things are doing better - IBS is pretty much gone, although I sure miss my bagels and cream cheese (gluten and dairy free among other foods). Wishing everyone here well - I know so many people have it so much worse than me day to day. Love to all who are suffering…


#6

How are you? Really, that isn’t just 3 words. I actually want to know. Thinking about you.