[QUOTE=jenlyn;617617]
Quote:
Originally Posted by Conductor71
Hi,
Keep in mind there are other rare things that half-heartedly respond to levodopa.
What kind of rare things??
My neuro says she doesn't think I have Parkinson's, just some kind of Parkinsonism, but I'm not really sure what that means and she says she needs to do more research. I had an aunt that died of Progressive Supranuclear Palsy. I sure don't want that one!
My new neuro is a Movement Specialist, I was referred to her because some of my symptoms (PLS) have changed over the course of 12 years and the dx of PLS is now questionable. Primary Lateral Sclerosis is supposed to be really rare, maybe 500 people in the U.S.
It also has no definitive tests, just upper motor neuron signs like Hoffmans and Babinski as well as hyper reflexes. My reflexes used to be quite brisk, but now are either non-existent or close to it.
Thanks for all the help.
Jen
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Jen,
I am so sorry; I didn't mean to alarm you. It's funny (odd funny) how neuro's and people who hear of our diagnosis as do we that "it could always be worse". I'm guilty of saying that to myself and my initial reaction to others who say it is to restrain myself from kicking them in the shins
We know as people who have or have had something weird going on neurologically that this does little to make us feel any better.
I really was just expressing cynicism because there is much doctors and researchers do not know. I commend your doctor for diagnosing you with Parkinsonism because she doesn't feel confident in committing to the whole deal. In essence, we all here have Parkinsonism, without any definitive tests or any real agreement on what Parkinsonism is, how can we all know for sure, I guess is what I am trying to say.
My story: I was pegged with Essential Tremor for 6 years prior to my PD upgrade; for all that time told they were two distinct disorders. Alas, recent research has revealed dopa loss upon PET scan, levodopa responsiveness, rigidity, slowness (very mild Parkinsonism stuff) is evident in people with Essential Tremor, so I am at a loss as to what is going on with me. Coupled with I do not have any PD biomarkers being researched. In fact, if I just look at symptoms and treatment, I am a poster child for a rare genetic mutation of Ataxia SCA12- it presents as Parkinsonism. This is super rare too. One thing that always makes me laugh too with neuros is how readily they dismiss anything other than PD by saying "Oh, that's extremely rare." Hmmm...like Parkinsonism in a 34 year old woman is as common as a cold.
I'm trying to say, please hang in there, ask lots of questions, push for tests, be your own best advocate. It sounds as if you are in very good hands right now. If I were you, given the longterm (misdiagnosis?) you have grounds for getting your insurance to cover the cost of a PET scan. Please keep us posted on your progress in getting an accurate diagnosis.
Laura