Length-dependent axonal polyneuropathy

General General CIDP Discussion
1

Here's hoping someone can shed a little light on my continuing journey dealing with

CIDP or Not? Having just returned from walking to my mailbox (approximately 100ft.)

my legs and hips feel as though they had walked for miles without a break. As I sit here

my chest feels as though I am being hugged / spasm which goes up my neck to my

head. For 4 years my neurologist said I had CIDP and then as many of you might be

aware, I was re-diagnosed this past Spring by Associate Professor of Neurology at

UofF Shands that I did NOT have CIDP but "Length-dependent axonal polyneuropathy.

Just recently (the past month) have I started having this feeling as though someone is

bear-hugging me. This feeling is accompanied by what I can only describe as a spasm

that radiates up my neck. Needless to say when this occurs it definitely gets my

attention. I also constantly feel warm and I seem to sweat a lot but my temp. is always

low...97.4 - 98.0. My energy level seems to be low to say the least. At night time if I

lift my legs, I will suddenly get a spasm in the back of my thighs. I often wonder if

given the fact that I had a bad case of Epstein-barr virus back in 1995, if this in some

way has something to do with my present conditon. I would greatly appreciate your

advice. I am totally at a loss as to what to do. Thank-You.

2

Hi Roy, I wish I could shed light on your case, but I am answering mostly to let you know too that I am at a loss about what to do. I am actually in search of a diagnosis. I've seen several neurologists who kind of dismissed me as having things "in my head." In just half a year, from a very healthy woman who did yoga 5 times a week I got to the point where it's painful to stand on my feet and I can barely walk for ten minutes. You say you sweat a lot. Me too. So maybe we can consult.

1. How did you get your CIDP diagnosis 4 years ago? What tests?

2. What did the new neurologist do differently/what tests to come to his conclusion?

3. Is it painful for you to stand and walk? How do your legs feel (mine feel very funny). But my entire body feels strange. I also have pain in my muscles. Do you?

I think I must have had a virus several years ago (possibly Epstein Barr) because before this weakness started I suffered of chronic fatigue for several years. Now my energy level is so low some days walking feels like torture. I don;t have the spasm and the bear-hugging feeling, but have other symptoms, like my bladder is acting funny--hard to control the muscles or something. Also several months ago I had trouble breathing at night. Do you have nay breathing problems?