I have sensory cidp, not sure if I understand this sensory cidp. I can walk for a while with two crutches but cant keep my back up straight and have positive romberg's. My legs are worse than my arms but still get a lot of weakness in my arms. I only have one reflex working which is in my left arm and diminished pinprick. After my fist course of ivig I could hold my back up straight and my romberg's was negative. this lasted for 3 weeks but started going down hill. Just had my second IVIG and my back is up straight again my pinprick is getting better and can walk indoors with out crutches as long as I sit and rest in between.I'm having more IVIG in six weeks time. My doctors say my muscles are good with just minimal weakness so why do I find it so hard to move my body and feel such weakness as its predominantly sensory. Also is any one from the uk or any others with predominately sensory cidp ?
hi and sowwie about your sensory CIDP;
I have sensory polyneuropathy is it related ? I don't know?
but I read what everyone has written when I first found this site...and guess what I have a lot of the same things going on with my feelings, pain, and other stuff....
I been trying to get in to see a neuro doctor since mind said he can't help me any further. So I would like another opion or confirm whatever...just to make sure I have what I have. So far my husband has been here and read what people written here...he is convience I have this CIDP.
I also have COPD without ever smoking....that is a wonder....I guess it's what I did for a living, valley fever, and getting too many lung infections. whatever...I guess my Phump doctor thinks it could be a lot of these all together. Plus I have a partly claps lung.
I have Arthrits so bad everywhere...I have two tummors one in my back T12....with 12 claps disks....
I also have Socillos (mis spell) and wasn't discover until I was too old to have any surgery....so it plays a roll in maybe some of my not feeling and prossiblity my drop foot but so far they don't understand why I have drop foot on my left foot....and now my right oen is dropping...
I also have cyst in my brain, and I guess I could go on with things as do so many others here.......
I have no idea why I have been coming down with one thing after another? It is so strange....
I fall down a lot broken bones...etc.
so why sensory? It has to do with the EMG's study's done on me.....but I have never had the other tests just tons of MRI's....where they can see things changing in my MRI's to my nerves.
So there you go.....I got to get into a better neuro doctor ....that is my goal....
God Bless and I wish you tons of good wishes.....
I am on Lyrica now....never had those IV's med's.....I had a bad reaction to Gabpinton ( mis spell) for my pain...just started it...so far it makes me sleep so far a lot....and it seems to take my pain everywhere in my body away for a short time.
But my husband made a tape of me last sat. when I went all parilized from my hips down....I couldn't even move my feet...he had to move my legs and feet for me. My husband has to dress me too.
I have weird things going on all the time and bad and good days....
Ruthie
thank you for your post....