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How long before you were diagnosed?

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Old 08-16-2010, 12:10 AM   #1
Join Date: Aug 2010
Location: Ohio
Posts: 1
piopio HB User
How long before you were diagnosed?

My pinky was twitching. Then my first finger, then ring. Middle man got jealous and in on the game, but only once or twice. My head jerked back once for no reason, but I'm thinking that it was a freaky fluke and totally unrelated to the party my fingers are having (to which I was not invited, which IMO is a little on the rude side. Stupid fingers.)

I ran off to the doctor right away. I kept the Digit Diary to the best of my ability. Been through a gazillion tests. EMG, MRI, CT, PET, etc.

Now he wants to start me on Parkinson's drugs to - finally - rule out Parkinson's. Which I know means that I have it.

But I'd like to finally be done with all the testing and IF and MAYBE and all that jazz.

So, I'm wondering how long other people had to wait before they could stop worrying and start dealing.

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Old 08-18-2010, 02:06 PM   #2
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Join Date: Sep 2007
Location: Massachusetts
Posts: 132
Pens'nChalk HB User
Re: How long before you were diagnosed?

I've been diagnosed, after years of odd symptoms and six months of mri's, etc. but with RRMS instead of the early stage Parkinson's Disease i believe I have. Be careful what you wish for ... symptoms are similar, but treatments are different. Treatment for RRMS is a self-injection either every night, three or four times a week, once a week intramuscularly, or once a month intravenously done in a clinic. The treatments all have side effects. I have been taking the nightly injections for three years, with no dramatic difference in my ongoing symptoms.

I've now joined a national study group looking at genetic biomarkers for Parkinson's Disease in people who have a family history of PD. I have several members of my parents generation who had PD ... I have no relatives in a very large family who have had MS. I continue the painful nightly injections because I'm afraid to stop without the doctor's okay, and he is convinced that, for the time being, this is MS ... he has not ruled out eventual PD.

My parents had PD, both of them, and neither was disabled until their late seventies and early eighties. MS threatens disability without warning, at an earlier age, unpredictable disability, temporary or permanent unknown. It is a prognosis of lifelong self-injected shots and worry about the unknown ... like a monster under the bed, ready to pounce unannounced.

My goal is to be diagnosed with the PD I know I have ... and then to feel justified in discontinuing the MS med that so troubles me, and beginning the PD medication that might help.

Be careful what you wish for ... and ignore people who suggest that you would be grateful for a diagnosis and "treatment."
Dx 06/07
Copaxone 07/07
"I can do no great things ... only small things, with great love."
~ Mother Teresa

Last edited by Pens'nChalk; 08-18-2010 at 02:20 PM. Reason: answered "how long"

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