Hi McCullough, Thanks for your comment. I've had a spinal tap which showed raised protein levels. Do you know if this is what they look for or is there something else that would show up if I did have CIDP?
Heather said:
I'm also wondering about degree of weakness; I can't climb stairs without using my arms to pull myself up, but I don't know if this constitutes enough of a weakness.
How much is enough? If you’re getting weaker, that is all you need to know, and you need to stress that to your doc.
Do not wonder about meeting someone else’s idea of enough weakness. When did you notice it, how long have you been experiencing it? Unless you have always been unable to climb stairs without a handrail, something is causing progressive weakness. It is not imaginary, so do not let your doctor ignore it.If you have progressing weakness, you will soon experience the wasting effect as the muscles become atrophied and literally disappear. Are you getting skinnier?
CIDP can come on real fast~ for me, I went from needing to use my hands to get out of a chair or climb stairs to total paralysis in a little over three months~ but for others, it can take years. I don’t mean to be alarmist, but it sounds like you may need a neuro who has run into CIDP before.
My reflexes have come back pretty well in the two years since getting on treatment, but I don’t think that means my CIDP is cured. Now I get weird pains and incredible cramping in my legs, feet, and hand, mostly at night. I don’t take anything for it, but I do take prednisone and cellcept to keep the immune system in check,and I lift weights and exercise to regain my strangth.So, yeah I think those are just part of the deal.
Thank you for your comments Jeff. I used to be very fit and active. Cycling and hiking were a big part of my life and climbing stairs was no problem until the last few years. I also have painful feet and legs, and sometimes one of my arms too, in bed. I now rely on sleeping tablets to be able to sleep.
Hi everyone, I'm back again with more information, but unfortunately more questions too! I have now got the letter the neurologist sent to my doctor. My upper limb and ankle jerks were 1+. I have looked this up and it is "low normal, diminished". Does anyone know if this is significant please?
He has stated in his letter that because the clinical findings and neurological findings were unchanged compared to 2011 he was discontinuing IVIG. I have read that IVIG has a 50 - 70% success rate and I'm wondering whether I do have CIDP but the IVIG is not working for me (perhaps because it has been left too long to treat)
He also has said that examination of the limbs revealed normal tone and normal power. I'm not sure how he has come to that conclusion regarding power as I'm not aware that he tested power at all! Perhaps if he watched me trying to climb stairs without using my arms to haul myself up he would not say I have 'normal power'!
Would value your opinions please :)