Hi, Christine - yes, I can see your messages. I'm sorry you don't have the answers that you need. Have you seen a neurologist and a rheumatologist? When you say "all tests" does that include a brain MRI and/or a DaTscan? Have you had autoimmune testing?

It is frustrating to have to deal with symptoms without knowing their cause. I've learned that not every disorder can be definitively diagnosed and I've seen a plethora of doctors. Most were helpful in some way, a few were dismissive - even a neurologist at Mayo Clinic. He said, "If you hadn't been on Levodopa-Carbidopa, I may have been able to give you a diagnosis." Well, neither he nor his staff ever suggested I stop taking it before I spent $3,000 I could ill-afford to get to Rochester to ask for a diagnosis!!! Every time I asked him what could be the cause of one of my symptoms, his answer was always, "Well, the test was normal." I said, "I have trouble emptying my bladder, I have to really work at it and keep trying, it takes several tries to get it empty when I get up in the night or first thing in the morning." He said, well the sonogram shows your bladder is empty." When I said sometimes my blood pressure drops when I stand up, or have been standing awhile, especially in the heat," he said, "Well, the tilt-table test was normal." He could give me no possible cause for my tremor, SFN, RLS, weakness, fasciculations or anything else, because, "the DaTscan was normal." I asked if the DaTscan was reliable for diagnosing a Parkinsonism and he said, "Well, it's true, no test is 100%." Which means that his constant, "Well, the test was normal," did not get me any closer to a diagnosis and that was the entire point of my expensive journey. My husband tried to explain to him that he can feel my muscles twitching all night when I'm asleep, as if my nervous system is constantly misfiring and to that he said, "The EMG was normal."

He did offer to refer me to a pain clinic, assuring me that, "Pain disorders like fibromyalgia are quite real," even though pain wasn't one of my symptoms. Even being dismissed in this way taught me something. It taught me that there are neurologists who are not good at their job.

Many neurological disorders are diagnosed clinically - not through testing. My (first) local general neurologist diagnosed with with a parkinsonism after seeing me clinically every 3 months for 2 years, by ruling out other diseases through testing and by my positive response to Sinemet. Since then I've gone to Mayo Clinic in Rochester, I've seen 2 movement disorder specialists locally as well as a specialist in RLS, I've been diagnosed with SFN and RLS and switched to a dopamine agonist patch which controls my worst symptom.

Now I'm back with my original general neurologist because he's followed me for 3 years, he's respectful and he's the most thorough of all I've seen.

So, my suggestions would be to keep advocating, don't give up, find a neurologist who respects and listens to you, see a movement disorder specialist and a rheumatologist if you haven't already. Be tenacious. You can come out on the other side!

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