new member question?

    • Anonymous
      April 6, 2007 at 10:29 pm

      What a wonderful forum to finally fall upon. I am post GBS since Aug 2002, 3 months after returning from China adopting our little girl. Needless to say it rocked my world. My poor husband was teaching us both how to walk, hold a spoon and cup etc… in hindsight it was really a beautiful experience but I’d never wish it upon anyone. I was in the hospital for 6 weeks since I have Lupus they couldn’t diagnose me right away. I actually made a great recovery and was about 90% back so I went back to work part time a 2 1/2 yrs later. Then I caught the flu and it kicked my butt, now I am worse off than before and I have CIDP so they say. What I don’t understand is how can they tell from just a metal hammer that vibrates and some nerve conductor tests?? I use a cane full time, walker for distance (which my daughter loves!) and try to stay positive but it’s getting harder. I’ve lost my sense of propreoception so I can’t feel anything combined with the tingling & numbness it’s madning! Any good refferals in Long Beach Calif??

    • Anonymous
      April 6, 2007 at 11:31 pm


      Welcome to our Forum family! Reading your story makes me think of one of our forum members. She too adopted a beautiful little girl, her name is Claire, from China (I think it was China).

      I really cant answer your question as to how they know its CIDP by the tests they do. However, if you have requested the literature from the Foundation, found on the web page, then they probably will be sending you a booklet amongst other things, that helps and describes GBS vs. CIDP rather well.

      Just a few extracts from [I]Guillain-Barre’ Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy[/I] – [B]An Overveiw for the Layperson.[/B]

      pg. 45
      Chronic inflammatory polyneuropathy differs from accute inflammatory polyneuropathy or GBS in other inportant aspects, including rate of onset of symptoms, course and duration of the illness, and response to treatment with corticosteroids.

      Whereas in GBS maximal weakness is usually reached within days to a few weeks after onset, in CIDP the weakness develops slowly and may take 6 to 12 months or longer to peak. …………. In some patients, weakness develops very slowly without improvement. In others, the weakness progresses slowly to reach some olevels after which slow improvement in strength, with the cycle repeating again and again. The characteristic behaviour explains the other names for CIDP, including chronic relapsing polyneuritis, recurrent form of GBS and chronic relapsing GB polyneuritis. Each cycle of exacerbation and remission or flare-up and improvement can occur over many months. With each remission, the patient’s strength may return only partially, or to a level that is better than before the flare-up. the cause of flare-ups and their timing is not known. Thus, the course of CIDP is unpredictable.

      Page 46
      Diagnosis of CIDP
      The diagnosis of CIDP can be difficult, especially in its early stages. To some extent, the diagnosis of CIDP is one of exclusion. …………………
      …Just add to the physician’s difficulty in making a diagnosis of CIDP, some patients initially present as a picture of GBS. They become weak suddenly, have diagnostic evidence of GBS and are treated for this. Then, rarely, some apparent GBS patients go on to develop a slow recurrence or weakness and are eventually re-diagnosed as having CIDP.
      …diagnostic criteria for CIDP ….
      * slow development, over at least 4 weeks, and more ften over more than 8 weeks, of weakness affecting both sides of the body more or less equally, and typically ascending to involve the legs and arms. (In contrast to GBS, breathing and facial muscles are rarely effected.)
      * loss of, or decreased, deep tendon reflexes, such as the knee jerk.
      * usually (about 80%) elevated cerebrospinal fluid rotein, without an accompanying increase in spinal fluid cells.
      * electrodiagnostic evidence, via a nerve conduction velocity-electromyography study, of damage of peripheral nerve myelin. Features including slowing of the speed of conduction of an electrical signal by the nerve (reduced conduction velocity).
      * absence of other causes of weakness and peripheral nverve damage such as :
      – exposure to insecticides pr sp,e sp;vemts
      – some medications
      – alcohol
      – tick bites

      Phew, my hands are hurting rather badly now, I apologise for not checking for my mistatkes. You probably know most of the above though, I just thought it may be good to see it again.

    • Anonymous
      April 7, 2007 at 12:15 pm

      hi joyce & welcome,

      Dxing neurological probs are not easy. RU saying you had/have lupus a long time B4 getting gbs in 2002? were you given ivig or plasmapheresis? what tests were done to re Dx you from gbs to cidp? what are they Rxing you for the cidp? i ask cuz from what you posted it sounds like there may be other possibilities, but i’d rather not to voice my opinion till we hear more from you. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 7, 2007 at 1:39 pm

      Thanks, Alison and Gene
      I was diagnosed w/Lupus finally in 1990 after 6 years of telling me i was borderline and crazy! My ANA levels would be off the chart and then by the time I saw an internist it would be back in remission again (I had an HMO at the time) I used to be a flight attendant so my skin blotches they claimed were from the airplane, and hand tingling carpal tunnel. I was fine with that diagnosis and prednisone seemed to work. I guess it’s what I wanted to hear. As long as I listened to my body and got enough rest my lupus stayed in check with very few flare ups.
      Then 3 months after we came home from China I started to get really tingily.
      I assumed it was my Lupus, and with my new baby I was doing so much more I knew I needed to slow down but then even eating things started tasting fuzzy. Then my legs gave out while I was holding my daughter. Luckily I didn’t drop her and my husband had just stepped out to the store. When he came home he thought we were playing a game because we were both sitting on the floor. I looked at him and said “I can’t get up”, after that all my muscles seemed to quickly break down, I couldn’t hold anything sit up, go to the bathroom on my own, etc… My spinal Tap came up neg They were ruing out everything but not finding anything and my bladder almost burst because I kept telling them My back hurt and they said of course dear you had a big needle inserted. No one realized I hadn’t gone to the restroom in 21 hours. I Think then my sister took over for my husband and got in their faces and said Look it’s not her Lupus find something else she has great insurance and shes double covered. I switched to a PPO when I got my daughter “Thank God!” Sooo anyway, after lots of tests In the hospital and IVIG working I was diagnosed with GBS. My symptoms first started with tingling in extremities and moved throughout my body.
      My CIDP came later after the flu beacuse it was a slower progression and I am continually getting weaker it appears to be moving up, I get IVIG twice a month which help with the pain but not the weakness. The weakness continues…. I don’t want to end up in a wheelchair but they tell me this disease is incurable but can be slowed down. What do you think??
      Sorry so long,

    • Anonymous
      April 7, 2007 at 6:59 pm


      i’ll pass whether you ever had lupus to begin with cuz it does no good in the here & now. from what you say, cidp seems reasonable especially since the 2X/wk of ivig helps. RU still on prednisone? how much? if successive NCVs confirm that you are getting weaker, which they should, after all you know your body better than the tests. the tests are for the docs sake. anyway, it means your immune system is generating the bad gbs antibodies faster than the present amount of ivig can neutralize them. how much do you weigh? how much ivig do you get per month? that’s all they give you in a month’s time. take care. be well. ps. forgot to ask; do you have joint pain? do you lose much hair? did you ever?

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 7, 2007 at 8:03 pm

      Hi Joyce, CIDP isn’t curable but it is treatable. There are other treatments beyond IVIG that are used to help us also. I also have Lupus and CIDP so I can relate to what you are going through. I think if I were you I would seek out a second opinion with a different Neurologist just to see what they recommend. Possibly a more aggressive approach with your treatment would help you regain some mobility. Never give up.