Organs and stuff

    • Anonymous
      June 20, 2006 at 12:23 am

      Does CIDP affect organs, eg. stomach, hearing, swallowing, digestion, etc.??? My stomach doesn’t give me a clue if I am hungry. I eat by the clock. And other places on me. I have to use concentration when I swallow, or if I don’t, a 3rd of my food gets stuck in my throat and then it meanders to forbiden places and I end up coughing a lot.:(

      🙁 I was going to just flash my positiveities and here I go complaining again.:D

    • Anonymous
      June 20, 2006 at 1:33 am

      Looking back on things when Emi was 1st hospitalized we’ve realized that she was having trouble swallowing. One of the dr’s at the hospital said that CIDP/GBS will affect your throat then it could start on your lungs. I don’t know accurate that is & I don’t want to worry you, but I thought you should know that so you can make the appropriate decisions for yourself.

      During a relapse Emily has very bad stomach aches. She doesn’t ever get full either. I swear she will eat 6-8 full meals a day if I let her. I’ve caught on now & I will have her eat small healthy snacks throughout the day.

      So the answer to your questions are yes & yes.


    • Anonymous
      June 20, 2006 at 3:06 am

      Patricia ANNE,
      Our autonomic nervous system (ANS), which is part of the peripheral nervous system, is the part of us that controls those bodily functions that we don’t have to think about. They include control of heart rate, lungs, blood vessels, blood pressure, sweating, eye muscle movement, salivary glands, digestive system, bowel and bladder functions. These workings of the ANS function in an involuntary and reflexive manner, so that we don’t notice when our heart beats faster or our blood vessels change size.

      In any peripheral neuropathy the autonomic nerve fibres may also be affected. A number of studies have shown that various levels of autonomic function instability are frequent in GBS sufferers, ranging from severe to mild involvement. The figure has been put at between 65% and 80%.

      In GBS patients any dominant clinical picture of weakness of the breathing, and/or other muscles, may lead to abnormalities of autonomic function going unrecognised. They may then be ignored and left untreated.

      Something of a similar situation may also be true for CIDP sufferers. Yet if any of these functions are in disarray the impact on the patient’s comfort is considerable.

      All the above involvement has been principally observed in connection with GBS, and as the sufferer improves the signs disappear. However, CIDP sufferers have also reported or commented about some of these autonomic function irregularities, especially milder heart rate issues, breathing difficulties with “cramped chest”, bladder, bowel and digestive problems. Often these problems have begun co-incidentally with the onset of the main CIDP symptoms. Some have reported that they were then told, somewhat dismissively, that they were being anxious or hysterical. For others the presumption has been made that the digestion or bowel problem, for example, is a separate issue and nothing to do with the neuropathy. So a GP or other physician diagnoses an irritable bowel syndrome.

      The CIDP patients’ autonomic system problems should not be surprising. CIDP shares some of the features of GBS, and is in these respects its’ neurologic cousin as a slower onset and usually less drastic version of GBS. Most CIDP patients have their disorder for the rest of their lives, usually never serious enough to have required hospitalisation, but carrying the progressive or relapsing – remitting consequences of the neuropathy through in an adjusted lifestyle. In this CIDP sufferers often experience the continuing autonomic involvement in a milder form, as may be the case for GBS sufferers who do not make a complete recovery. None of this would be apparent from clinical tests or even general observation but it has a significant impact on the daily or intermittent experience of the individual concerned.

      My sources for the information in this somewhat lengthy reply (sorry!):
      1. Guillain-Barré Syndrome and the Autonomic Nervous System. Article in “The Communicator”, journal of GBS Foundation International, by Gareth J Parry, MD. – Professor and Head of Department of Neurology, University of Minnesota USA.

      2. Peripheral Nerve Disorders. Booklet published by GBS Support Group (UK and Ireland) and compiled by Prof. Richard Hughes and others. Available online at [url][/url]

      3. Guillain-Barré syndrome, CIDP and other chronic immune-mediated neuropathies. Hartung et al. Editorial review in Current Opinion in Neurology 1998. 11; 497-513.

      4. Answer by Prof. Thomas to question put to Doctors’ Panel at GBS Support Group (UK) conference 1999.

    • Anonymous
      June 20, 2006 at 3:34 am

      Hi, Patricia Anne.

      Yep, been there, done that. My first symptoms were difficulty swallowing and feeling like I had something stuck in my throat, and difficulty taking a deep breath. That was twelve years ago, and after numerous tests the doctors just shrugged and said it was the onset of menopause (I was 39 at the time). Four years later I started having the tingling and numbness in my extremeties, and was finally diagnosed with CIDP in 2001. A couple of years ago my neuro and I were discussing the course of the disorder and I mentioned about the breathing and swallowing, which she said were no doubt the first symptoms I had of CIDP.

      Having said that, autonomic symptoms aren’t that common with CIDP, so make sure that you talk to your doctor and rule out other problems before assuming it’s CIDP.

      Best wishes in the battle,


      PS: I carry a bottle of water with me, and whenever I eat out I ask to have a glass of water regardless of any other drinks I’m having–it’s hard to wash food down with hot tea!

    • Anonymous
      June 20, 2006 at 6:11 pm

      Thanks so much, all of you who answered. And kenspdn, I like that long discussion of “my” disease. Every one of you told me things I need to know.

      When I think back, I had cramped chest and back muscles that felt like “I was run over by a truck” (as discribes some heart attacks.) All along the way for years and years my doctor would do tests and tests and they were always normal. Nothing wrong with me. I described it saying I felt like I had a basketball inside my chest.

      This happened when I was working the hospital lab, in the old days when we mouth pipetted (with no safety-blocking cotton) chemical reagents and even patient fluids. I never did get blood or urine specimens in my mouth but some of my lab friends did. Before that job, when I was in school, my lab partner had a rack full of tubes containing live botulism, tetanus, plague, etc. She dropped it and all those specimens splashed on my clothes. I tell you so you can imagine what lab classes and hospital workers put up with.

      And that is also when my sensory system began to be fouled up and continuing . . . My friendly supervisor assured me it was only leprosy. (That is what leprosy might start out with.)

      All of your comments help me to realize that I’m not malingering (believe me, that hurts). Got that from family, had the feeling it was doctors thoughts too.

      That stomach stuff, speedy heart beets, sweating spells, blood pressure, are REAL. And I’m not neurotic, just sick. It kind of gets me off the hook. This is a really fine school.
      Be well.

    • Anonymous
      June 20, 2006 at 10:25 pm

      This is a p.s. to my previous post, and another question.
      (Those links were terrific.):D


      I get headaches from resting my head on ANYTHING. whether it is my pillow or against the back of any chair. I wake up at from 2am to 5am. It is burning pulsing pain on the back of my head. The longer I wait the worse it gets. So I can reduce the pain by sitting in a chair for the rest of the night. I wish I could really rest. Without fear of that pain. I think it is worst when it’s going to rain in a couple of days. In a while it ingulfs my whole head and can last all day or more. Or if I wake without headache, I will have it again by 1 or 2 pm.

      I told this to my GP, my internist, 2 neurologists, 2 physiatrists, a couple of PTs, (all these over several years and moves) Every one of these doctors just sits and stares at me and does not say a thing, or even write anything. They stare long. They order CTs and MRIs. All normal of course.

      Anyone ever heard of this? None of my docs apparently have.


      Oh, if I could figure this out I could even sleep without a pill for sleep and pain.