New Person – need help and have questions

    • Anonymous
      September 17, 2006 at 12:36 pm

      To start off I am sorry if this is too long. I’m not sure if I have CIDP. I’m baffling my doctors. I have lower back pain, I have a great deal of trouble with my legs, especially at night (its not RLS = restless legs). They jerk like crazy (about 50 times an hour),(feels more like electrical shocks). I have extreme fatigue, I stumble often but have only fallen a couple times. Its not uncommon for me to stagger (no not drinking either). I only have trouble walking on the days that my legs are acting up very badly and its not that I can’t walk, I become to exhausted to walk – I think would be more correct. I am also a cancer patient with advanced Melanoma. For three years now every brain MRI I have shows demylination and it contiues to increase. They thought it was MS. I’ve seen MS specialist (4) all agree it is not MS. I’ve had spinal taps. High protein levels (still not MS). I get exhausted doing just little things. I am greatly effect by heat or hot weather. My feet and legs fall to sleep easily. I have trouble getting up from a sitting position – it feels more like everything has stiffened up and it aches to go from sitting to standing.

      In April I had lesions show up in both my lungs (10 total) and brain (3) total. They first believed it was the spread of my cancer (as it likes these organs very much). However to all our dismay, the lesions stablized! In June they were still stable. The specialist are baffled and confused. Seems there is a disease (some type of inflammatory disease) that can and sometimes does show up on CT & MRI scans in the lungs and the brain. I understand the normal treatment for this is Interferon (which I’m not a fan of). I will actually be traveling back to MD Anderson Cancer Center in Houston, TX next week to do my CT & MRI scans again (I asked for a 3 month break) along with blood work, x-ray and whatever else they want this time. I will also be having a lung biopsy in hopes of getting one of these lesions and some surrounding tissue to determine what we are dealing with.

      I was just wondering if this sounds familiar to anybody at all. I know my lung doctor gave me a name but I could not begin to say it – let alone spell it. Next week I will get him to actually write it down for me:o

      I could totally have the wrong thing here. I’m really concerned because IF its not the spread of my cancer (which I hope its not) and ends up to be this CIDP or some of the other things I’ve read – I will still have a problem. My cancer advances with immunesuppressant (sP) drugs, can’t take any type of steriod drugs (it advances it) and can’t take hormone drugs of any type (doesn’t apply here).

      Any thoughts? Have you ever heard of something like this? I would just like to feel good again and I would LOVE for the demylination going on in my brain to stop.

      I’d like to say I’m sorry in advance if I’m off base here and have taken up valuable time needed for somebody else.

      Thank you,


    • Anonymous
      September 17, 2006 at 2:07 pm


      Wow…sounds like you have been through the wringer…….Let me start out by saying I am not a Dr nor any type of specialist…I am a person with GBS and now CIDP (which is simply Chronic GBS) and your description sounds like GBS might be what is causing your peripheral neuropathy (high protein levels from your spinal tap and symptoms described). Has any of your Neuros prescribed IVIG treatments?

      I know I am not helping much and there are others on this forum that can be of better help (DocDavid?)

      Come back anytime and let us know how you are doing….and welcome to our family.

      God Bless

      I am also a Texan and live in Abilene……feel free to chat with me anytime.

    • Anonymous
      September 17, 2006 at 3:42 pm

      Hello Debi,
      You have a full plate of problems and I wish from my heart that I had answers for you, but I don’t. Maybe one of our members DOC DAVID will see your post and respond with whatever help he can offer. If it is CIDP that you have, it sounds like you’re saying prednisone, IVIG’s and PP’s can’t be used and those are the CIDP treatments most commonly used. Many of the cancer treatment drugs can be used.

      Until you find out what is wrong, we’ll try to help and support you.


    • Anonymous
      September 17, 2006 at 5:21 pm

      hi debi & welcome,

      your symptoms are unusual for straight gbs or cidp. that does not rule them out. did they ever do an emg/ncv on you? take care. be well.

      gene gbs 8-99
      in numbers there is strength