OMG OMG OMG!! got a phonecall from neuro at hopkins tonight! yep! sunday night! they had an extensive meeting about my complexities and their conclusion is i had a one time hit when i was 15 years old from encephalitis depleting me of dopamine. there is no brain cell loss according to the daTscan i had at cleveland clinic, so according to hopkins, this is NON progressive! what has been going on is the wearing down of the rest of my body functioning on a reduced rate of dopamine for nearly 30 years. THIS explains the swings and severe reactions to meds. My spinal issues make sense as the struggle of movement ensued from so long ago. neuros words.. from hopkins.."this is NOT parkinsons disease." they want me to go to mayo for their input as well. i have an appt there oct 9th. they are putting the puzzle together to see all of me! finally!! thank You God for opening their eyes!

crying from joy

never give up
never give up

Fantastic news! I did not know you were still in limbo...must be such a relief. I could not even imagine. What was the tipping point for them? I take it they looked at your spine?

I wonder how many other walking wounded are being burdened with a misdiagnosis.

I go for a DATscan in late October. I am hoping for a different outcome too.

Laura

That's good news finally Laura!!..I thought there was something different about your symptoms and your reaction to Sinemet

The other thing didnt make any sense was that after 20 something years of "pd", you were only taking 300 mgs of sinemet per day, and if you took more than 300 mgs, it made you worse..I had, had pd for about 6 years at the time, and I was on 600 mgs per day

I hope they can get you straightened out..You suffered more than enough..I dont know how you got through some of the suffering that I witnessed..But in spite of it all, you never gave up, no matter what

I am so happy for you!

I am so happy for you Harley. I hope your meeting at Mayo gives you more encouraging news and help. Please keep us posted.

But do ride carefully. At least part of the time.

Very happy for you, Harley. Makes me wonder about myself. Dx almost 6 years ago, but symptoms far longer. Main symptom is a severe tremor, plus back pain & other muscle/joint pain, otherwise have done really well. Sinemet & other meds don't help & actually make me worse (muscle cramps, dystonia, etc.). Does this sound like you? Please keep us posted on what Mayo says.

Absolutely wonderful news!! You were right all along, Parkinson's Disease definitely does NOT have you!