A CIDP puzzle

    • Anonymous
      March 28, 2008 at 5:45 am


    • Anonymous
      March 28, 2008 at 7:07 am

      Hi Elizabeth, Can’t help with the dx question, but the fainting part sounds like neurocardiogenic syncope(I have the same problems, delayed gastro etc,) these functions are nerve related also. Are you on any meds? Do you wear compression stockings? I understand how you feel, still going through it myself.

    • Anonymous
      March 28, 2008 at 7:27 am

      Hi Elizabeth,
      You could be describing me – Except for the fainting. I have had CIDP for years now and suffer from horrible nausea – my stomach takes forever to empty and I also have dry eyes – these are in addition to the usual CIDP stuff.
      My balance was pretty bad until about a year ago when I did a 3 month course of balance classes with a physiotherapist/physical therapist – which helped a lot. I haven’t fainted though. I do know that my blood pressure can vary in a short time though – it can go from normal to low – regardless of what I have been doing.
      I was starting to wonder if I had something else going on as well?? What does your Neuro say about your symptoms and has the IVIG helped the nerves that empty the stomach?
      I hope you have an improvement soon.
      Best wishes,

    • Anonymous
      March 28, 2008 at 6:34 pm

      I have these problems too but I haven’t fainted recently. Here is what Wikipedia has to say about IVIG and why it’s probably not helping our autonomic or cranial nerves…

      [B]IVIG is an infusion of IgG antibodies only. Therefore, peripheral tissues that are defended mainly by IgA antibodies, such as the eyes, lungs, gut and urinary tract are not fully protected by the IVIG treatment. [/B]

    • Anonymous
      March 29, 2008 at 2:33 pm

      Just a thought as I read your post… What about POTS? I have a cousin with that who faints often & presents with similar problems as yours…

    • Anonymous
      April 2, 2008 at 2:35 am

      Hello, Elizabeth. Some people have autonomic nervous system involvement as part of GBS/CIDP. These are the peripheral nerves that control bodily functions. Part of this is gut system movement (GI motility) including emptying of the stomach. this can become quite slow in GBS/CIDP and cause nausea. The autonomic nervous system also controls how open the blood vessels are so that blood can pool in the legs on standing. This causes people to drop their blood pressure and feel faint on standing. Not commonly, but it happens, if the autonomic nervous system is not working correctly, the eyes will get dry. So, autonomic involvement can explain three of the four symptoms. Balance is more likely involvement of the sensory or motor nervous system, the first due to not feeling where in space your body parts are and the second from not being able as subtly to compensate for changes in position.

      More importantly, there are specific things that sometimes help compensate for autonomic changes. If someone gets easily faint with standing, it helps to stand up in increments (sitting up in bed for a little bit, sitting on the side of the bed for a little bit with feet over the edge, then slowly rising, etc). If this does not work, drinking LOTS of fluids–meaning up to a couple gallons or taking extra salt (which helps the body hold on to fluids) can help. If there is blood pressure drop with fainting and this does not work, I have seen people take a form o steroid called florinef (that people whose adrenal glands do not work right take for replacement).

      For the GI effects, eating lots of little meals can help instead of the typical big ones. A medicine called reglan can also help.

      For dry eyes, lubricating drups (Tears Naturale or similar) can help. It is also worth having someone make sure that your eyes close completely with blinking or sleep.

      I hope this helps.