Need some guidance

    • Anonymous
      May 21, 2010 at 9:00 am

      Hello Everyone;

      I’ve been dealing with whatever this is for almost a year now and I’m scheduled to see yet another neurologist in June. I don’t have health insurance and I’ve exhausted the free clinic options, (including MDA) so this one I’ll have to pay for….$400.00 just to walk through the door!!:eek: The problem is, I’m wondering if this new neuro will be any better or know any more than the others….or if there’s some other way I should present myself that will get her attention!

      The 3 other neuro’s I saw did a quick reflexes exam..said they were ok and basically made me feel like I’m making it all up! One did a Lyme disease test..negative. The MDA clinic did an NCV, (done by an asst. not the doctor and it took no more than 3 – 5 minutes) MDA said nerve conduction results were within normal limits and that’s all they could do for me.

      I still continue to have many of the same symptoms I read about on this forum and they are progressivly getting worse, especially muscle weakness, pain and spasms. So now I’m I go to another neuro..I have no Lyme disease, a normal NCV and apparently normal reflexes….how is this appt. going to be any different? The doctors only seem to care about REFLEXES! They basically say as long as I have reflexes, there’s nothing wrong! I’ve even been told by all of them that I’ll probably have to get worse before I can be diagnosed!!….WHAT??….THAT’S what I’m trying to avoid!!

      So….any ideas about what I say to this next neuro?? Right now I feel like NO ONE BELIEVES ME!!!!….and that’s the one thing I don’t know how to deal with!

      Sorry for the long post….I’m very frustrated! Thanks for listening!!


      P.S. I’ve gone to all appts. prepared with my written history, tests, list of symptoms. No one reads any of it or asks about specific symptoms. They just do that reflexes test and send me on my way.

    • May 21, 2010 at 9:29 am


      Sounds like you’re well prepared for the discussion with the neuro. I think you just need to keep shopping for a neuro who will listen. I’m not sure where you live, but the first thought that came to me was to contact the GBS-CIDP Foundation directly and get their recommendations on neuro’s in your area to shorten your shopping. Also see if there is a support group in your area who can give you recommendations. (Also if you’ll give your general location some folks may have recommendations of neuros in your area who they’ve had good experiences with).

      My NCV took about an hour; 3-5 minutes isn’t right.

      I’m sorry to hear you don’t have insurance; if you’re in the US, maybe the county hospital is a route to go.

      I’m glad you found us and I will pray for you. Please keep us up to date on your situation.


    • Anonymous
      May 21, 2010 at 10:49 am

      It could be so many things, I guess until one gets bad enough, neuros tend to blow people off. Personally, I find most of them to be an arrogant group! About the reflexes, I eventually did get all of mine back, even though I have extensive nerve damage below the knees (I wear AFOs to walk & use a cane), hands are at about 70%, knees & hips are still somewhat weak…in other words, I don’t put much stock in the fact that my reflexes are back.

    • Anonymous
      May 21, 2010 at 12:06 pm

      Lori diagnosing any disease in the early stages is very difficult. Unfortunately often a person has to deteriorate before there is enough evidence present to make a diagnosis. However, keeping a sharp eye on things is critical. Hubby started his journey with a top neurologist with complaints of weak pincher grasp. NCV’s negative and told to come back in six months to a year if things changed. More NCV’s a year later with the same comment. Symptoms got worse and hand strength weakened. Got a diagnosis of carpal tunnel, had surgery, and now forearm and hand showed profound atrophy. He went back to the same neuro. who repeated the tests and then sent him to a neuromuscular disorder clinic who did comprehensive testing and he was diagnosed promptly but he wound up with permanent damage as a result. The atrophy crept up on him as he was so discouraged from the rounds of testing that were seemingly negative and he figured why bother to go back until it got really bad. From what I’ve read, it is critical to have comprehensive EMG and NCV testing by an expert versus your local neurologist. We wish we had known that at the start of my husband’s symptoms as he would have not likely had such damage with comprehensive testing. In your shoes, I would make sure that if you are going to have to pay for the tests that you have it done at a neuromuscular disorder specialist. Good luck.

    • Anonymous
      May 21, 2010 at 12:25 pm


      Sorry to hear about your run-around. The same thing has been happening to me. I went to a rheumatologist the other day. She spent a long time with me, but sent me on my way and said to come back in 6 months, no meds, nothing. She said it takes 2-3 years to get a diagnosis. Everything I read about autoimmune diseases says that the early the diagnosis, the better, so you can get treatment. How are we supposed to do this, when we can’t get a diagnosis? I have some muscle weakness, but primarily muscle aches and pains, tingling, numbness, hypersensitivity, etc. All of my tests have been normal too. I guess you just have to keep searching for a different doc, and/or go to Mayo. The recommendation to check with the Foundation on docs in your area is a good one. However, I did this, and still did not find that the doctors were very knowledgable or helpful, so it depends. Good luck!

    • Anonymous
      May 21, 2010 at 12:38 pm

      I think one helpful test that can be done early is the one done by Athena Labs called a sensori-motor panel. It picks up autoimmune things. We had to pay $1500 for it as provincial and private insurance didn’t cover it.

    • Anonymous
      May 21, 2010 at 12:46 pm


      Sorry about difficulties getting a dx. You didn’t mention any blood work for heavy metals, C-12 deficiencies, etc. – Have those test been done? Those are some of the test they ran on me during the early days of try to figure out what was going on with me.

      I know you don’t want to hear this, but it took them a few year to figure out I had CIDP. I hope it doesn’t take you that long. My problem was I have the form that progress very slowly. Hang in there and keep try and keep your sense of humor.

    • Anonymous
      May 22, 2010 at 9:16 am

      For all the kind words and suggestions..and just the feeling of not being alone!

      I’ll check with the foundation and all other options.

      Jessicah….I also had “mild” GBS, but from a virus..back in 2004 w/ a relapse in July 09..and your right about the muscle weakness. I guess it is more of an aching with intermitent sharp pains than weakness since I still seem pretty strong. It’s really more that I have initial strength but no sustained strength for more than a few seconds without pain.

      Pam..thanks for the reflexes info….I’m not putting much stock into that opinion either! Especially since my reflexes seem hyper..and that can’t be “normal” either!

      I just don’t understand why doctors (specialists) that are supposed to know about all this..don’t know about all this! Thanks again to all of you for your great info! I’m sooo happy I found this forum!! The advice and encouragement in this “scavanger hunt” are invaluable!!

      I hope you all have a sparkling day!!:D