Need some guidance

Lori,

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.

Gary

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.
Pam

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.
Laurel

Lori,

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!

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.
Laurel

Lori,

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.