Have you ever heard of this before…

    • Anonymous
      October 12, 2008 at 3:30 am

      OK, I think I have a weird problem, at least I have never heard of this being mentioned before. Has anyone had problems with their stomach collapsing?:confused:
      Last month a ct of my abdomen showed what several drs thought might be a mass, well another ct with contrast proved it might have been a collapsed stomach. This all started with a very painful kidney stone with nausea/vomiting and flank pain. Well the kidney stone was passed, and the pain level has, for the most part, subsided, the nausea is there but only half the day and lasts half as long.
      I’m wondering if it is a possibility since I have auto-system involvement, from eyes to bladder involvement, if this is considered a residual. From the day I went paralyzed in 05 to present, I have not recovered much in the way of bladder functions, was tested 2 weeks ago and the results were very abnormal. As for the stomach, I can still eat like normal, but do have extended times on digesting after large meals-like 2 to 3 days longer. Since I don’t have the normal feelings in my stomach it is very difficult to tell when I am full and even to tell when I am hungry-no growling or aching etc. My lungs are still affected, cough everyday and very painful-inhalers aren’t touching the broncille tubes or congestion. My heart rate is always fluctuating and of course my blood pressure does the same.
      Of course all this goes along with the painful, burning feet, the zaps, the spasms and sensory loss. Is this just me or is it common with cidp?
      I can’t see my neuro due to medicaid issues, so until we can get insurance through my hubbies new job, I can’t get in to see a neuro. Please don’t tell me I’m the only one with these odd problems:(

    • Anonymous
      October 12, 2008 at 7:10 am

      Nope, you aren’t the only one. I don’t have a collapsed stomach, rather the opposite, but I’ve got similar digestive problems to what you described. Not to mention the bladder issue that hasn’t improved on me either – oh joy… it’s funny how autonomic problems aren’t supposed to be part of CIDP and yet there are SO many of us that have them… :rolleyes:

    • Anonymous
      October 12, 2008 at 7:49 am

      I have the Neurogenic Bladder and the Intestinal problems but no collasped stomach just yet! My lungs to have problems. But no stomach problems just yet! But I do keep GERD! Terrible Gerd!

    • Anonymous
      October 21, 2008 at 7:40 am

      Man i thought i was alone. my tummy didnt colapse. but bladder and other cant control. and drink prune juice to help with other .havent found bladder fix just get up at 2,3,4,5and after that i just stay up:D sleep somtime problem. to but sorry for rambeling just wanted to let you no your not alone. and say hi im new to this but enjoying:D what is gerd????????????

    • Anonymous
      October 21, 2008 at 8:49 pm

      [QUOTE=Julie]Nope, you aren’t the only one. I don’t have a collapsed stomach, rather the opposite, but I’ve got similar digestive problems to what you described. Not to mention the bladder issue that hasn’t improved on me either – oh joy… it’s funny how autonomic problems aren’t supposed to be part of CIDP and yet there are SO many of us that have them… :rolleyes:[/QUOTE]

      Julie, autonomic nerve involvement can be and is a part of CIDP in many cases. It’s funny how we’re often told they’re not, but the autonomic nerves are a part of the peripheral nervous system. DocDavid explained this to me very clearly a few years back. If you do a google search on “CIDP and autonomic nerves” you’ll find a ton of information. It doesn’t happen in every case and autonomic involvement can ebb and flow, but I think it’s far more prevalent than our doctors recognize or discuss (no idea why). I was having swallowing difficulties a few years back and my neurologist was adamant that it wasn’t CIDP related. I’m sure it was.

    • Anonymous
      October 22, 2008 at 12:39 am

      This may help all of you. First as the caregiver my husband did have most of these problems when he was at his worst. Knowledge is very important and even though I mentioned some specific things that autonomic seemed to be a symptom of Bill’s everyone said no.I am talking e d. If you go to the web for University Hospitals In Cleveland there is a large article about their testing of autonomic disease and that they are specialists on it. some symptoms you may have and some you may not. Just look it up under google or directly to the hospital.
      About Gerd. I have it and so did Bill when he was going thru his sepsis.(blood disease).He started taking tums or whatever he could get to stop it. there are several presriptions out there for this. Even though I do not have any neuropothy problems I would have Bill take one of my Gaviscons over the counter pill. Gerd is actually acid reflux better known as heart burn. He does not have any of those symptoms any more but still has the autonomic problems.

      Even though he does not have cidp his nervous system problems are still a part of Amyloidosis. It can and does affect organs but also nervous system just like cidp.Hope this helps.

    • Anonymous
      October 22, 2008 at 3:03 am

      Hey Cheryl ~ you are not the only one! Over the past 13+ years I’ve been very aware of the times when various organs weren’t working correctly. My gallbladder was functioning at less than 14% and looking horrible inside when they removed it. The doc had no explanation for it but I knew what happened 😮 Often my kidneys will go on the “fritz” for a couple of days and then “mysteriously” function great for several weeks. As to the heart; it beats weird sometimes. I got a very rare lung disease 5 months into the GBS (rarer than GBS, can you believe that 😮 ) I have alot of central scar tissue so climbing stairs, scrubbing the tub, vacuuming, are very difficult. And if it gets windy, that’s a full day of just lying around. And need we address the issues with our diaphragms??

      With these kinds of rare diseases, we the patient, have more knowledge than the docs. Remember they are practicing medicine ~ we are training them!! 😀

    • Anonymous
      October 29, 2008 at 3:07 pm

      Amen, Judy Z! We are training the docs–if only they would listen!!

      About neurogenic bladder . . . can anyone explain that to me? My daughter is 5 now–had GBS last year at 31/2–and still wears a diaper at night. She is frustrated as none of her friends wear one anymore, but she also dribbles all day long (in underwear). We have no idea whether she is having a GBS related problem or not. The urologist was useless, so is the neuro and our family doc. Where are the docs that can help? What do I tell my child?? I am sick of feeling like a terrible mom because I don’t know when to discipline her and when to have compassion. My family is starting to suggest I am doing something wrong by not having her potty-trained at night, but as far as I know, kids eventually stop peeing in their diapers and then you put them in underwear?? She fills her diaper every night so I have not pushed the issue. But now she wants to be in underwear and I have no idea whether her issues are GBS related. Of course the docs say no. Whatever, she NEVER dribbled before GBS. I will google neurogenic bladder, but if anyone can help, please do. Thanks!