I was diagnosed with CIDP in January 2017, after being sick for many months. IVIG quickly stopped the nerve pain, and I hoped I would improve. But the atrophy of my leg muscles continues, confirmed by MRI. My neuro (who is an expert on CIDP — I’m lucky to be his patient) says the type of atrophy I have is always present in CIDP. If you have a mild case, the muscle atrophy will be mild. If you have a severe case, as I do, it will be severe. It can’t be fixed with PT because it’s not caused by muscle disuse. It’s caused by neuro-muscular transmission insufficiency/instability. The muscles can’t possibly return to normal strength and bulk without working nerves. I have virtually no muscle left in one ankle, and the muscles farther up on both legs are wasting away. I went to two therapists who work with neurologically impaired patients, and both said PT for balance was pointless because my balance won’t improve until my nerves regenerate (which will probably never happen). I keep doing exercises mainly to strengthen my back and take some of the burden off my damaged legs. The progress of the damage has been stopped (for now) by IVIG, and I have no nerve pain, but any actual improvement is barely measurable after a year and a half. I’m just maintaining overall, while my muscles continue to deteriorate. I have no question. Just needed to vent. I am extremely discouraged and miss my life. I hate this disease.
I recently was started on cellcept in hopes to stop the progression. Too soon to tell. I agree with the muscle atrophy but I would say that do not give up moving and trying as regeneration is possible. I understand about hating the disease. Take one day at a time…
I walk as much as I can (stumbling around with a cane) and do a full 45 minutes of back exercises every day. The CIDP doesn’t affect my back, of course, and I need strong back muscles to keep going. The progression of my disease has stopped for now, and I realize what a great thing that is. It’s discouraging, though, that the muscle atrophy continues although the nerve damage is not progressing. (If it progressed much more, I would not be able to walk at all.)
I hope you get some help with halting the progression of your CIDP. Just staying in one place is certainly better than getting worse.
SandraP, my heart hurts to hear your story. Do you have family/friend support for this journey? Are you in counseling? If not, it might help as you transition to a new view of life, and find a “new normal” for yourself. I am glad you are able to walk even with your current limitations. I hope you use this forum for times when you do need to vent, and that you get the additional support that can be so valuable. You are in my thoughts and prayers.
So sorry you’re going through this. We all have different presentation of symptoms. They all stink. Take care of yourself. Keep fighting. That’s my mantra: Keep fighting!
I am blessed with many friends and have a totally supportive husband. They don’t know how to help me, other than loving me and being there to listen. This is all so depressing because I had an immediate positive response to IVIG in the beginning, and my neurologist was very optimistic that I would regain a lot of my function, even though the EMG of my legs was terrible — 20% nerve function in the left leg, 33% in the right. (My arms and hands had minimal damage and have not gotten worse.) But after getting rid of the nerve pain, I have not improved over the past year and a half. I probably went into rapid remission in response to high doses of IVIG and have stayed at that point, but the atrophy has worsened. I could either start improving as far as my nerves go or suddenly start getting worse again. Either way, I now have so much muscle damage that I’m unlikely to regain much, if any, of the muscle function. A lot of it is simply gone, replaced by fat — typical, my doctor says, of severe CIDP. I am headed toward paraplegia.
Thank you, Jeanne. Back at you.
I am glad to hear you have minimal damage to your hands. I hope that makes your day to day ability to function independently a little easier. This process is discouraging for all of us, especially with no end in sight and no real improvement expected. My husband has pretty much completely lost the ability to use his hands. His quality of life is very poor right now. His balance is better, but he is definitely skin and bones now and still cannot navigate stairs or uneven terrain.
I hope you are able to find some pleasure in life.
. Sounds like my story exactly.