i get dizzy

    • Anonymous
      April 26, 2007 at 4:19 pm

      I have had some real bad residuals show up lately. first of all the pain is at a 10 again. deep bone pain. constipation at an all time worse. have a cough that comes and goes. I can set at the computer for a while or watch tv and get dizzy. I stood to hold a ladder for my husabnd. just a security thing for him cause he knows if he falls he falls and i cannot do anything about it. But I kept telling him that he needed to hurry up because my legs really really hurt after about 10 minutes I told him that I could not stand there much longer and he looked down at my feet and calfs they were purple,red, and had pink blotches. they were so sore and they hurt all day now. of course he feels real bad. when i explain this to my nuero she says that this isnt CIDP? well everytime she and my gp decide that tis is not CIDP and we do 100’s of new tests and they all come out negative. what am i supposed to do? i have asked for my IVIG again and they are trying to get that going again but if this isnt my CIDP what is it?? NO fever. just the usuall pain and constipation.. any suggestions or ideas…….

    • Anonymous
      April 26, 2007 at 6:36 pm

      What about something rheumotologically (sp?) wrong? I know before I started my neurological “journey” I was seeing a rheumatologist for joint pain, swelling, constant heart burn and other problems. I did test positive for a few things, but then I started tripping, dropping things and numbness and I can only handle so many problems at once.

    • Anonymous
      April 26, 2007 at 10:04 pm

      Nate is 16 mos out from GBS and he has always had the purple red feet thing, when he sits with his feet down. He never had it happen til he got sick.
      They told me that it is blood pooling in his feet. If he puts his feet back up or level with his heart, it goes away again.
      It has to be related if you didn’t have that happen before you got sick. The docs just might not have a good explanation as to why it happens. They don’t know everything and when you come at them with a weird one, they don’t always know what to tell you so they say its not related.
      I have seen other posts that talked about it also. The one person said the more he moved around, the less he got that.
      Trudy, natesmom

    • Anonymous
      May 19, 2007 at 1:21 pm

      I suffer from damage to my autonomic nervous system. Perhaps your CIDP is doing the same to you. Your autonomic nervous system takes care of all the reactions you don’t think about like breathing, pulse, blood pressure adjustments. In my case, changes in body position cause my system to make adjustments that it can’t make properly anymore. Similar to what you mentioned, I can visibly see blood pooling above my knees upon standing. When the blood finally begins to flow properly, it goes too fast causing me lightheadedness. When it initially started, I would have dizziness seated or standing and would have to lie down to alleviate the problem. All of these postural change-related blood pressure things are normally handled by the autonomic nervous system. So abnormally regulated blood pressure then causes the pulse to race to even things out. I have been prescribed Jobst stockings to help regulate the blood flow to my lower legs. Look in to it, if my problem sounds familiar.

    • Anonymous
      May 19, 2007 at 9:06 pm

      [QUOTE=nebraskafan]deep bone pain. constipation at an all time worse. have a cough that comes and goes. I can set at the computer for a while or watch tv and get dizzy. NO fever. just the usuall pain and constipation.. any suggestions or ideas…….[/QUOTE]

      Hi,

      Do you get very cold too? The symptoms you describe above could also be thyroid related. They were for me together with a B12 vitamin deficiency and high thyroid antibodies. I thought for a while that it was CIDP as many symptoms are similar. Just an idea 🙂

      I hope that you find out what it is.

      Hugs,

    • Anonymous
      May 24, 2007 at 6:50 pm

      Michael,
      I don’t know if you saw this thread. I thought it might help