CIDP Questions

    • Anonymous
      April 27, 2008 at 5:50 pm

      I was diagnosed with CIDP back in Sept 2007. Since then my neurologist has tried Ivig, 70 Mg’s of prednisone, 100 Mg’s of prednisone and now weaning me off of the prednisone and I am waiting to get scheduled for P/E. My walking has become worse, today it took me 2 hours till I could get downstairs. my neck and back were killing me and everything I did was such a challenge. This seems to be getting worse. I brushed my teeth and had to run to the bed and just lie down. Is this normal? I am at my wits end – it seems that if I am sitting I am OK, but the thought of standing up is getting to be such a challenge. Again,is this normal ? I can’t stand this anymore. I am not sure if these symptoms are normal or not. In addition, even eating has become a chore. It seems that my speech is slurring a slight bit and after chewing a while, my jaw even gets tired. Aside from that, I’ve had the runs for over a year and this has been horrible the past 2 weeks – that seems to be getting worse as well. Any help / suggestions / confirmations would be appreciated.

      4/30/08 – just a quick update – catheter line scheduled to be put in by a vascular surgeon this Monday, P/E scheduled for Tuesday 5/6… anything I should know ahead of time? Is this pretty much as easy as the ivig or worse?

      Thanks for listening.

    • Anonymous
      April 27, 2008 at 7:27 pm

      I can relate to being so tired that I had to go rest after brushing my teeth and having to eat meals in bits because it was too tiring to eat a “normal” meal all at once. I would not call either of these “normal” for CIDP, because of two things. 1) I do not think this is normal (but it happens) and 2) there does not seem to be a standard for all people with CIDP–there is a lot of variation.
      What you might do….
      Plan to rest after any activity.
      Get better pain control–this is really important because pain is extremely tiring and it sucks the life out of you.
      Eat in little bits. Use a microwave to reheat or serve only one thing at a time or (what I did most) eat what is best served warm at first and later eat things that the temperature really do not matter.
      Also, why wait until you are off the prednisone before starting PE. I cannot think of any reason to do so. You are worse. Get the PE going!
      Have you discussed the runs with your doctor and are you both sure that this is not representative of a bowel disease that might also be causing/contributing to the neuropathy. I do not know if you spend a lot of your limited energy running to the bathroom, but if so, think about ways to not use all your energy for just this. If you can be sure that the loose bowels are not infectious, then Imodium or similar medicine might give you a little longer rest time between trips to the restroom.
      I am not sure why standing is so hard. It can be because it hurts, in which case, you need better pain control. It can be because it takes more energy now to balance, and using a walker or even cane can help this a lot. I lean against the wall a lot, too! Oh, well.
      Finally, hang in there and keep hoping for better days.
      With Hope for cure of these diseases.

    • Anonymous
      April 27, 2008 at 9:07 pm

      Hi – I experienced all that you talked about… except my bowels were always ok…. that really fliped me out (however I did eat less junk food after I got sick) – I remember my jaws hurting all the time… after I put my clothes on in the morning I WAS WORE OUT! – Hang in there, pray for patience and strenth… I haven’t had a treatment in 4 years…. but when first diag. I didn’t think I could make in at times…. All you are going through will pass…. just hang in there….

    • Anonymous
      April 27, 2008 at 10:59 pm

      I am sorry you are having so many problems. After I was diagnosed, I was wheelchair bound for several months. IVIG and Pred and Imuran and Neurontin for the pain helped a lot. Everyone reacts differently. Have you called your neuro? See him as soon as possible. If necessary get a second opinion. Within 6 months I was on my feet again and slowly built up. I still do IVIG regurlarly, and am still trying to reduce the pred. It is now 6 years later and I am still tired a lot. That is a part of this disorder that everyone is affected with. I will be praying for you.

    • Anonymous
      April 28, 2008 at 1:25 am

      [B][SIZE=3][FONT=Book Antiqua]Hi Ken,
      I am sorry to hear you are in the midst of this crap. It sounds very familiar to me. And the bowel stuff could very well be CIDP related. My neuro asks every visit if I am having trouble with that. Lately the chewing thing has been getting more noticeable for me too. I have to take small bites and concentrate so as not to choke. I would revisit these issues with your doc. It never hurts to ask. Keep us posted.

    • Anonymous
      April 28, 2008 at 5:34 am

      Hi Ken,
      I’ve had those problems since the beginning – what fun. I still have trouble chewing (had to pass up a beautiful steak yesterday), I still get the runs every day, I still have a leaky bladder, and I still have trouble speaking when I get tired. It might not be CIDP related but I had none of these problems before CIDP. I’ve learned to live with most of them but I agree that running back and forth to the bathroom can be exhausting. I don’t do chemical binders but if I’m having too many visits to the bathroom I’ll eat some rice, drink milk, or drink rice milk and that binds things up for a little while. On the other hand, I can also go through long periods of not having bowel movements at all so I have to be careful not to tip the scales too much in that direction either – it’s more comfortable to have the runs than be constipated.


    • Anonymous
      April 28, 2008 at 12:11 pm

      I was dx in Nov 2007 with CIDP. Everything you have listed has been the ?normal course for me, except for the bowels. The only problem i have there is loss of sensation and when i have to go it is a right now thing.
      My husband had to build new lower steps that are wide enough to accomadate a walker for me to get in and out of the house.
      standing or attempting to walk, even with the walker was an excuratating experience., remains difficult as going up steps do.
      use an electric power chair to go to a store with dave. i have only had it for two weeks. until then had not been to a store for over six months.
      plasmaphresis with prednisone and cellcept seem to have done the most for me, but is short acting. had my last phresis on april 4, had 17 good days and am now experiencing a relapse and will be calling md in am to see about more phresis.
      hell is the name of the game, however, with frequent rest periods, meditation, and prayer you can get to a better place mentally.
      i thought i would never adjust to these changes in my body, mind, speech, etc. but, i have found with help from the people here on the forum, prayer and david, i’m slowly recognizing when to rest for a day, do more, call md, etc.
      you will improve. you will begin to know what your body is telling you. we are all the same, but react different to this crazy illness.
      keep on posting and know we are here for you.