Hi. I was diagnosed in July with CIDP. When I went into hospital I was almost paralysed but IVIG worked really well and I walked out a week later. I’ve just had a second round and due for a third next week. I have quite a bit of pain in my thighs, especially in the morning and after exertion. Will this go away? Is it just my muscles getting used to being used again or is it here to stay? TIA
From my reading and experience CIDP often seems to affect the distal/distant nerves first (feet, then, calves for instance). The proximal (nearer the Central nervous system, so thighs) nerves come later. Sometimes the hands and forearms come later than the feet/calves. It seems to me to be length dependent - the longer the transmission path the bigger the effect on the nerve signals for the same amount of demyelinisation per inch/cm.
In my case, that’s the way it has gone. Looking back, there were effects on the shorter nerves all along, but subtler ones. I noticed effects on the autonomic nerves, internal organs, the bodies management of balance, digestion, blood pressure etc later than loss of sensation, burning etc in the feet or sometimes numbness and clumsiness in the hands, reaching and so on. But that doesn’t mean that there were not processes of deterioration going on in proximal nerves too. Symptoms are what you notice, signs are what you can measure with biopsies or electrophysiology, I guess.
I started IVIG late after decades of various diagnoses by various neurologists - in order, starting 30 years ago, mono-neuritis multiplex, then CMT, then hereditary pressure palsies, then investigations for MS, Motor Neurone, and finally, 5 years ago CIDP and treatment. I am lucky I guess that at such a late stage I can still, barely, walk, and IVIG has greatly slowed down the development. I am told that those who get an accurate diagnosis at an earlier stage have better chances of something closer to full remission.
Rare diseases are a problem for diagnosis still.
Thank you Ignatiusfor your informative response. I have CIDP and Ivig has helped me a lot. I am now reciving chemotherapy for cancer and was advised to hold off on any ivig for now. I am also fearful about the possible side effects of ivig. Does anyone else have these concerns? David with CIDP
Oh gosh, you’ve really been through it. I’m glad you have the diagnosis and IVIG and I hope you continue to improve.
I hope it will turn out to be on the better side of average for you and the problem with your thighs will settle down.
I was diagnosed with CIDP in 2012 and this has been a very interesting journey for sure. CIDP is not the fun ride the marketing department sold to us in their shiny brochure! !
Can you define the “pain in the thighs”? i.e Cramps, Charley Horse, electrical tingling/pulsating, can you visually see the muscle harden?
Are you able to at the very least, contract and flex the offending muscle? Can you ‘feel’ the beginning of the ‘pain’ coming on and try to mitigate it?
if you/someone else push hard on the muscle with a finger/fist will it ‘spring’ back into movement?
Haha it’s certainly not fun! The pain is constant and feels like an ache. Bottom of the quad muscles and around the knees. There’s no spasms or anything like that, and from the outside they look normal. But they ache most of the time regardless of whether I am using the muscles or not.