Motor Problem

    • Anonymous
      August 13, 2007 at 12:46 am

      Hello Everyone

      Does anyone have just a motor problem with CIDP? Do you know if you have
      axonal damage? Has anyone regained any improvement? If so, what are you

      Warm regards…

      Miami Girl 😎

    • Anonymous
      August 13, 2007 at 1:06 pm

      Miami Girl,
      My CIDP is about 90% motor — extreme weakness, unstable gait, etc. A year ago when I was diagnosed I was unable to rise from a chair, could hardly walk, was having trouble bathing and feeding myself — not a pretty picture! I received 3 IVIG treatments in hospital and the improvement was almost immediate. I got myself out of the car when I got home! Within a week, I was nearly “normal.” I continue to receive IVIG regularly and my strength, as measured by my neuro (with gauges), has improved steadily to where it is well within normal range now. Still get a bit unstable as the IVIG wears off and have significant hand tremor (IVIG related?) but can function almost as well as before the disease. Fatigue is still a big problem — I wear out easily and pay for it if I overdo — but motor function is very good.

      I had a sural nerve biopsy during diagnostic stage which showed that there was no axonal damage. I think EMG/NCV can also indicate if there is axonal damage, but the biopsy is definitive. I also have relapsing/remitting type CIDP, which tends to have better “recovery” outcome and response to IVIG than progressive type. I don’t take any other meds for CIDP.

      Wishing you the best,

    • Anonymous
      August 13, 2007 at 1:51 pm


      How long have you had CIDP? How far from the symptoms until you were
      diagnoised and started treatment?

      So you can walk on your own without any help? Did you go through rehab?

      Thank you for answering…

      Miami Girl

    • Anonymous
      August 13, 2007 at 2:38 pm

      Hi Miami Girl.

      My symptoms started around the beginning of 2005, but they would come and go — sometimes completely — so I didn’t do much about it. I saw my family doc and had an MRI to rule out MS and a bunch of blood tests to rule out other stuff. He referred me to a neuro that I disliked, so I didn’t pursue it further. Was pretty much in denial, thinking that one of the times the symptoms went into remission it would stay that way. But no such luck. A year later (2006) the relapses were definitely worse — even got stuck in my airline seat on a business trip once — so I went to a different neuro in March of 06. After many tests, including EMG/NCV, blood tests galore, and muscle and nerve biopsy, was diagnosed in July 2006 and started on IVIG at the end of that month (as soon as the insurance co gave the OK).

      I never completely lost the ability to walk, although it was pretty rough at times (my husband bought me a cane, which I stubbornly refused to use!) and I needed help getting out of chairs, etc. Even bought a raised toilet seat for home, started using the handicapped stalls in public (not always a good move — some have really low seats) and my husband had to “push” me up the stairs on occasion. I basically would just “muscle” my way through, continuing to work and drive and do pretty much everything else the whole time. I had very little muscle atrophy (some in right arm and leg — I’m left handed) and no rehab. Just regular activity and periodic IVIG (starting every 4 weeks, now every 6) to regain strength. Like I said, sometimes during the remissions I felt completely normal, so apparently my body was in a cycle of myelin destruction and rebuilding, which probably was why my results from IVIG were so dramatic.

      My few sensory symptoms — burning/tingling/hypersensitive feet, some numbness in feet/toes, and “random shooting pains” — have not improved but haven’t worsened in the past year either. When I’m really tired or the IVIG is wearing off, I also feel short of breath easily and my eyes get strained/blurry, especially from computer use. But at this point none of that is bad enough to try further medications. I consider myself among the lucky ones with this disease.


      PS. I’m 47 yrs old, have an 11-year-old son, and do not look forward to opening my veins for IVIG for the rest of my life, but, as they say, it beats the alternative. 😉

    • Anonymous
      August 13, 2007 at 7:19 pm


      You are one of the lucky ones. I started with falling off high heels on my
      right foot…lol…then, the foot drop started on the same foot. I was diag. in
      1997, but by then, had axonal damage. I have never had anything else
      happen, other than extreme weakness when I was off the IVIG for two mos.

      I weaned myself off of the steroids since April…so I just use the IVIG. I
      stood up in the bathroom yesterday, it felt great, but I hyper extended my
      knees, so they would not let me bend to sit again…so, I was stuck holding
      onto the doorknob and the sink counter…lol…so I just leaned back to get
      back into my chair. That was a real hard fall, but I made it.

      Is there anything that you have besides the CIDP? I have been reading alot
      and find that there are a majority of dtrs. that feel there is always another illness. I’m wondering if there might be something else going on with me or
      possibly triggered this to start.

      Miami Girl
      that happens on top of this disease.

    • Anonymous
      August 14, 2007 at 10:37 am

      Hi again. As far as I know, the only other medical problems I have are hypertension, depression, and high cholesterol . I take meds for the first two. I’m not sure what triggered my CIDP. I believe it was exposure to a virus on a flight home from San Francisco the October before my symptoms started (young Asian girl next to me was really sick), but my husband is convinced it started before then. It definitely was not before our trip to Maui in July of ’04 because I certainly would remember if I was having problems then, so another possible theory was exposure to mold or other pathogen during that vacation. During dx stage, I had mildly elevated serum CK levels, which usually indicates primary muscle disease, but the muscle biopsy ruled that out (I’ve read that for unknown reasons neuro patients, especially those with GBS, sometimes have elevated CK).

      My onset was that I noticed it was sometimes hard to get up the stairs and that my hands seemed weak — took both hands to put my car in gear. The day I couldn’t pump my hairspray with one finger was the day I called my doctor the first time (in this case the phrase “vanity kills” was negated :rolleyes:)

      Sorry I can’t be more help.

    • Anonymous
      August 14, 2007 at 1:49 pm


      Thank you…like me, it seems there wasn’t anything that started it. I did
      have a neuro tell me it was genetic in nature, but my DNA genetic testing
      showed no malformations.

      I had walking pneumonia once before this started, but I wasn’t on any heavy
      drugs or any vacines. My original neuro says it’s either viral or bacterial.

      I know the feeling of not being able to spray when you are weak. Hairspray,
      Febreeze, tile cleaners…it’s rough. It got to a point where I could not open
      cat food cans…then, the IVIG started to change that.

      Miami Girl