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Living with Polyneuropathy CIDP, GBS, & CMT

Suffering with breathing problems - I know you all care

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.

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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.

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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.

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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.

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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…

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

Hi- it’s been awhile. I’m happy to report that I’ve been stable- I haven’t had a flare up since 2018. Feet and lower legs and face still off but no pain there or elsewhere. I’m off meds and take each day at a time. I pray for healing for each and every person suffering with GBS or CIDP. I know I’m very fortunate. I’m hoping I’m in remission and that my peripheral nerve symptoms never rear their ugly heads again.
Love to everyone.

And love from all of us.

Jeanne, your post will mean a great deal to the people who read it. Please stay around so that you can provide encouragement to the others here. It doesn’t have to take a lot of time. Just let others know you are there, listening, and there is hope for them as well.

So glad that you are doing well.

Seenie from ModSupport

@jacobs, are you still there? How are you doing these days?

rough weekend. Any one else with CIDP ever experiencing problems breathing? My husband spent most of yesterday in ER. Still can’t breathe well. Everything checks out except possibly some COPD and/or emphysema. But little to no air movement in lungs. Blood oxygen levels okay, so not on oxygen. But he still feels like he can’t breathe. CIDP has destroyed nerves in hands more than feet, so while he can walk fairly well he is essentially paralyzed from the elbows down. ER doctor gave him a couple of inhalers - which of course a patient cannot use without help if one cannot move the hands. Are we getting to the point he needs 24/7 care at the ripe old age of 58?? Trying to contact his neurologist today to get some help with answers. But would love to hear from any of you who have had any experience with breathing problems with CIDP.

Is there anyone on the community who can offer some support to @jacobs, whose husband is suffering from breathing problems?
Here’s her post:

Clicking on “Visit Topic” on your email should take you back to livingwithpolyneuropathy.org. If you haven’t logged in for a while, just say you forgot your email (even if you haven’t) and then follow the instructions. We’ll let you in again.

Thanks for your support!

Seenie from Modsupport @trust_level_0

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I’m the ripe old age of 63, since having CIDP I have always had problems breathing,it feels like I can’t pull in enough air! I have had CIDP for seven years and the only thing that helps me is a mix of azathioprine and gabapentin. I also think that everyone has a different mix of drugs that work for them.

Prior to diagnosis, I went to the hospital because I thought I was having a heart attack. I may be off in my opinion but I just wanted u to know, your husband is not alone.

Kim

Dear Jacobs,
Hi, i want to say i have a clean definitive diagnosis of CIDP since November 2018. I suffered with the profuse progressive illness for 11 months before diagnosis which was achieved after seeing 8 other specialists. I was diagnosed with a positive result to a nerve muscle electric test. Then i had about 50 other blood tests to rule out other diseases. I am 64 years old, female.
I do Not have COPD, but i can share this with you. I have had acute asthma since i am a child. Further. I have had acute anemia and insufficient red blood cell production which causes the anemia since i was a child. This is the only other thing that i think influences my breathing difficulties yet doctors often miss. It must somehow influence how well the red blood cells are oxygenated and one feels the good breathing. At times, my oxygen levels are a bit low, sometimes normal, but i have no congestion causing my asthma. However, i still have difficulty breathing. Get this checked immediately by his PCP.
With regards to his not being able to use the inhalers with his arms, he needs immediate assistance, possibly a wheelchair with robotic arms. You need to keep digging and remember the ER physicians do nothing. Keep digging for immediate assistance with the arms, then seek longer term assistance for long term support. Ok, keep the faith and keep pushing.
Anne

I was diagnosed with CIDP in March of 2017. I also had breathing problems especially after eating and if I over eat I notice it is worse. The Drs told me there was no signs of Breathing trouble and all tests came back positive. Eating less at all meal times helped. I hope he is getting regular IVIG treatments that over time could give him some more use of his hands. And strengthen lungs. With regular treatments it takes 2-3 years to know if your symptoms will improve.
Sorry to hear about your difficulties. Get with your neurologist ASAP.

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Four years ago I nearly fell asleep for the last time. Symptoms vary but the cause was hypercarbia (Google: also known as Hypercapnia and CO2 retention, a condition of abnormally elevated carbon dioxide (CO2) levels in the blood. Carbon dioxide is a gaseous product of the body’s metabolism and is normally expelled through the lungs.).

Since then I sleep wearing a mask connected to a Bi-PAP machine. My advice: CIDP and unusual or recurring breathing problems? - Ask your ER physician or neurologist for a Full Pulmonary Function Test at a pulmonary clinic or hospital.

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Yes I have breathing problems now and again but mine starts with relapses I was diagnosed 10 years ago. Take morphine for pain I am only 45 guys you hard to take care keep well

Danne

Ps try steroids prednisolone

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I am 63 years old. I got CIDP when I was 58. I was in top shape. My breathing became so difficult and to this day is still difficult. My neurologist told me it is all part of the condition. Your immune system is working so hard to fight for you that it wipes you out. I mean bending over to tie my shoes can be exhausting. I imagine your husband is feeling just that. Being compound with COPD and emphysema probably exasperates his breathing difficulty. My breathing difficulty was too much weight. I swim and I ride A recumbent bicycle for exercise. However I cannot walk a quarter-mile without being wiped out. But I can ride my bike for 10 miles I can’t figure it out. I’m learning breathing techniques. To help me stay relaxed and content. My goal is to walk more hopefully that will help with endurance breathing and fight off overall fatigue. CIDP is a terrible condition do I have. It is lifelong and you need to find ways. To beat it or it will beat you down. I wish you all the luck in the world if you ever wanna talk just let me know when my wife will talk to you for support don’t try going alone you will get lost I’m only trying to help you help your husband.Good luck and God bless you. Sincerely JUTTY

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You guys are all amazing. Thank you for the info and encouragement. My husband went through oral steroids, IV steroids, IVIG and finally Rituxan and continued to deteriorate through all. He finally completed the Rituxan program and has been stable for about 6 months, but by the time he stabilized he had lost all use of both hands. He can walk, but not long distances.

I googled hypercapnia. That sounds so much like what I am seeing, and what he is experiencing that I think that may be it. His neurologist suggested a Bi-PAP machine and he is resisting that at the moment but we will see where this goes. Andreas, your post was incredibly helpful. Thank you all, and I will keep each and every one of you in my thoughts and prayers.

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In response to breathing issues:
I’ve had issues. Vocal cord paralysis, decreased respiratory function due to muscle weakness (complicated by Asthma), and lung stuff.
If you want to discuss further please reach out

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Michelle1966, would love to hear more about your experience.

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