uncomfortable question

All my specialists say the disease is not terminal. However I think we are open to a lot of complications, some of which can be terminal. At this point as I progress there are so many choices one has to make. My best advice is to do everything you want while you can. As your physical abilities change so can your goals. Good luck

My understanding is, if it hits the autonomic nervous system hard, and can’t be treated successfully, then it can lead to death through cardiac problems or respiratory failure. I think it is often actually a respiratory infection that causes death, since the system is weakened.

Death from the disease is low probability though, since your treatments have to fail and your disease has to advance to the level to cause death, which is not a given.

In my case it was effecting both the respiratory and cardiac systems, which was scary to deal with. Thankfully, I’ve finally gotten treatment, which is helping with both.

Ladybug. What treatments are you on? I am currently on chemo, sumadrol, and plasma exchanges with no real success. I am having some problems now with swallowing as my gag reflex is diminished.

dieno,

I get IVIG with a bit of IV steroids weekly. I’ve had to be very patient with my treatments, for the first 4 months I got worse, then it took months before I saw improvement and it is very slow, but it is improvement.

I’ve had problems with swallowing in the past. I stopped eating foods that were giving me the most difficulty and luckily the swallowing problems actually improved on its own. Here’s hoping yours will too.

I believe I would not have been here today if I hadn’t finally gotten IVIG approved. I had autonomic involvement in my GI tract and respiratory system. I had diminished breath capacity and about a 10 minute transit time for foods. I was wasting away and had one bout of microsporidium, an air borne parasite infection often found in end-stage AIDS patients.

I have made progress with each and every IVIG infusion and continue to improve after 3 ys. I know I’m very blessed. Unfortunately, whenever we try to reduce my dose, or when I have missed treatment due to insurance or medicaid issues I begin the relapse process. So after 3+ yrs, I’m still geting 35 gms of gamunex per week.

The news, no more seizure meds, no antibiotics, lower thyroid and adrenal med dosage. I walk and drive and hike and swim, and ski independantly. I still fatigue more than many, and I can’t determine what my day will be like from one to the next, so I still can’t commit to working for anyone. Some days I’m disabled by pain, but that’s improving a lot too.

But yes, I do believe this disease can take a life. I just missed me so far! 🙂

When I first came to this site almost 5 years ago I remember reading that 70% of people with CIDP die from pneumonia. I never searched for a source online – it was just what another member posted.

There have been a few members over the years who had an unknown named variant of CIDP that have progressively gotten worse & passed away. That is EXTREMELY rare though. They are the very few who cannot find a treatment that works for them.

Kelly

USUALLY, a peripheral neuropathy will not have a terminal result. The damage to the nerves is USUALLY to the feet, hands legs and arms. Since none of them are essential to survival, CIDP is not considered a fatal diagnosis.

BUT. There are variants and other cases where the phrenic nerve (the one for breathing) becomes affected, and for all the obvious reasons, that is not good. NOrmally autonomic systems are not affected by CIDP, but I have read here in the forums of people who have CIDP and also have some level of autonomic nerve loss. So, I guess you never discount anything.

If you read the side effects of the drugs they use to treat us, you might wonder how any of us survive the treatments. (no joke) The drugs we take have bad side effects. I am sure that long term use of the drugs to help us, end up hurting us. We constantly take liver function tests and blood tests to check for abnormalities. Over time liver dysfunction could cause problems in other organs. Prednisone can cause a host of bad side effects with long term use. etc.etc.

Depression and stress of a long term chronic illness puts stresses on the body and the mind and relationships. All of this could lead to a shorter life span.

And finally, frequently those with a chronic illness seem to gather another illness/condition that might complicate the situation. For example, in addition to CIDP, I have sleep apnea, and have recovered from back, neck and gall bladder surgeries. Each of the “extra’s” happened after my CIDP diagnosis. NOw I don’t blame any of them on CIDP, but combined together, I don’t think I will end up living out my full 80 year life span, or whatever they are saying I should be living out right now.

So, I don’t think it is the CIDP alone, but combined with everything else, we probably lose some years on our life span. I try to enjoy all the time I have. I love my family, my kids are wonderful, and I hope to see grandkids in the future. Live for today and look forward to tomorrow.

Be good
Dick S

I was searching for old posts and saw KEDASO many comments.
He’s been struggling with end of life issues due to CIDP and I wondered if any of you had heard from him?