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Neuro test results

Anonymous

I went to the neurologist yesterday & underwent the nerve & muscle tests. He found nothing, and quickly ruled out neuropathy and carpal tunnel syndrome. The problem with my quads is still a mystery, as is the source of the chronic pain I've suffered my entire adult life. I don't know what to do next. I'm frustrated that none of the doctors I've been to have been able to figure this out.

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Sihaya

Veteran

So sorry to hear this BC. Have you had an MRI to rule out any major things?

rachylou

Veteran

Ever think about a neurologist in one of the big medical cities? With all my issues, I go to a research hospital. People from around the country travel to it...giant pain in and of itself tho.

Anonymous

Sihaua, I've had 2 MRIs and some x-rays of my spine and of my right foot. I've also had various blood tests. There are issues with my spine, but I've been told that none of them are the cause of my chronic pain. The pain in my foot was attributed to arthritis, but x-rays do not show arthritis. Gout and RA have been ruled out, and nothing showed up on the nerve tests.

On the plus side, the neurologist ruled out carpal tunnel syndrome, neuropathy, and muscle problems; but said that some nerve and muscle problems don't show up on tests, and that he may have to do a muscle biopsy if the pain in my quads persists.

Sihaya

Veteran

I'm so sorry to hear this. Must be so frustrating. I have had to come to terms with my issue knowing that the big items are ruled out. I just try to take care of my body through exercise. I know that doesn't help resolve your pain at this point - hope you are able to find some answers/peace soon BC.

Eliza

Veteran

So aggravating. Nerve pain is particularly challenging to assess. Sorry for your your pain and this aggravation. I am also a card carrying member of the "we hate medical ambiguity" club.

Anonymous

I asked him point blank what diagnosis doctors give when they can't find anything. His answer: "Fibromyalgia."

texstyle

(website)

Veteran

BC - Have you tried taking methylcobalamin (a specific form of B12?) I believe it is recommended for diabetic neuropathy and other nerve related pain. Look it up and see what you think.

catgirl

Veteran

Frustrating...

Style Fan

Veteran

Very frustrating.

Suz

(website)

Veteran

So sorry that you are suffering. Glad, though, that the big things they're trying to rule out have been ruled out.

K2

BC, I was diagnosed with fibromyalgia a few years ago after a myriad of tests that ruled other things out. For a couple years it would flare up and go away, but about a year ago, it flared up and didn't go away, just got worse. I did everything I did before ( I'm pretty active) but nothing helped. More tests were done and still nothing else other than a bit of osteo arthritis showed up. As I have done more research and worked with my excellent doctors here, More recent info shows that it really is a medical condition unto itself, not just something you have if you have nothing else. Often I describe it as if I have a deep achy feeling of the flu coupled with acute pain that doesn't go away like it should. It is kind of like you have a Pain light switch that is turned on and doesn't turn off. I've had hip, leg, arm pain and numbness/tingling that is quite severe at timee. The recent research Indicates they think that what happens is that your body's pain receptors are in high sensitivity mode all the time. Does that sound like some of what you go through? I finally found a med now that really helps though and if you think that's what you have there are a few meds approved for fibromyalgia available now that can make a difference in quality of life.

Anonymous

Yes, K2, that does sound a lot like what I've been going through.

El Cee

Veteran

BC -- Echoing everything K2 just said. I am another Fibromyalgia sufferer and some of your symptoms are just like mine. There is so much to still be studied and understood about this condition. It can be very debilitating. I have had some relief with Lyrica. Best wishes to you… and hope you find answers soon. BTW -- you may want to consult with a Rheumatologist.

SandyG

Veteran

This is a hugely controversial topic in medical circles, but here's my highly personal take on it. Some diagnosed fibromyalgia patients have low resting metabolic rates and low basal body temperatures (a little above 96 degrees). These two objective abnormalities are highly characteristic of too little thyroid hormone regulation, perhaps elevated levels of thyroid antibodies. A complete thyroid panel can give a lot of information in this case. I started a combination T4 and natural thyroid treatment plan and pain diminished, gained energy and brain fog lifted. Keep searching for answers and insist on tests. Some doctors only look at lab results, not the whole patient in the room, regardless of your documented pain levels. I could have CRAWLED into several appts with indifferent physicians and been totally ignored. Don't give up! There will be an answer that makes sense.

Anonymous

Thanks. My PCP, my rheumatologist, and now a neurologist are all working on this, so I am hoping for and demanding answers.

Gwennie

Given that have joint pain, I wonder if you've been checked for Lyme disease. I contracted Lyme disease and was quite sick with it. If it's not treated early on, it can cause continuing problems.

Anonymous

I'll look into that, too. Thanks.

Anonymous

Now I'm experiencing pain not only in my big toe, but also in the two adjacent toes. Not all the time, but periodically. I emailed my PCP, and she said that since the nerve tests didn't reveal anything, it's probably a local compression of the nerves and that I should just wear the right footwear. I guess I'll stick with my Danskos and other shoes that keep my toes from flexing.

Joy

Veteran

Gwennie's mention of Lyme's disease reminded me of a teacher who had been bitten by a small brown recluse spider. Although the bite was on her arm, it affected her whole body for years. If she hadn't seen the spider, she doubted if they would have figured out what was wrong.
I hope that you get some relief soon. It must be hard to deal with the pain.

texstyle

(website)

Veteran

BC - You know, I just was telling a friend about something I keep coming across over and over again. Lyme disease. And how often it is NOT caught in the first or even second test. Sometimes it has taken people multiple doctors to order different tests to get the real result. Apparently many cases of long term illnesses are misdiagnosed as arthritis, fibromyalgia, dementia and more.

If you do want to get tested, try to get the best test. See here:

"
Diagnosis is done through clinical history, possibility of exposure, as
well as diagnostic testing. Although many labs can test for Lyme
disease, the world’s leading lab is Igenex, Inc. in California. Because
they specialize in Lyme and associated diseases, their lab is the one we
prefer. Samples from blood, serum, and urine can be tested for the
presence of antibodies (the body’s immune response to the bacteria), as
well as for DNA from the bacteria themselves. There is no definitive
test for Lyme, and a negative test does not necessarily rule out Lyme
disease. If initial tests are negative, the doctor may decide to do an
antibiotic challenge to increase the sensitivity of the test."
Found here:
http://www.evergreencenter.net.....e-disease/

Anonymous

Thanks!