i wanted to reply to cs thread, but it became such a long reply that i didn't want to detract from his message. so i decided to start another thread.

ok, have we hit upon a nerve here? pun intended. i have been having back pain for years, even prior to my pd dxd. it was never addressed because of the dxd and everything was blamed on pd. as many of you here know, it was confirmed i do NOT have pd after a 28 year belief that i did. this was deduced through the findings in a daTscan taken at cleveland clinic and concluded at john hopkins. but, i DO have a level two dopamine defiency which was created by an attack of encephalitis/menangitis at age 15. the dopamine was wiped out, but i have all my brain cells, hense not pd. there is also damage to the neurons in the basil ganglia area showing from the encephalitis.

encephalitis affects the brain, menangitis the spinal cord into the brain. a few years after the first episode, i had menangitis again. i remember in my early twenties having to lay flat on the floor several times a day. my back hunched inward and upon laying on the flat surface, it settled to the ground. i was getiing horrid dystonia when they finally put me on sinemet at age 26. it helped immediatly thereby the neuro's conclusion i had pd. i also immediately had very bad dyskenesias. on the first dose of sinemet. they have tried me on everything from comtan to amantine to sinemet cr to antidepressants. nothing helps.

my spinal issues began to come forfront within the last 4 years. first i began to fall.. a lot. not due to lack of balance, my legs sinply crumbled beneath me. then the pain began. electical, burning pain that radiated. they took an mri of the spine and found c5,c6 herniated and did a cervical fusion. the mri also showed problems in the t section and herniations in L5-s1 with possible disk fragmentation. also degenerative disk disease in my lower lumber and stenosis throughout the spine. why they did not act upon this i dont understand. i am 'complex". seattle referred me to hopkins who referred me to joseph friedman in rhode island. myself and my caregiver have been staying at steve "da fisherman's" house since jan. what a blessing he has been.

on my first appt with friedman he put me on prednizone. it helped immediately. next was celebrex for the stenosis. another big help, but still had horrible pain attacks. i was however, out of the wheelchair. next went to a pain specialist where another mri was done of the lumbar. L5-s1 now shows a bilateral bulge which i was given an epidural of quartazone for. that was supposed to last for 6 weeks, i got refief for a week and a half. but, i did get relief. enough to where i nearly felt normal. enough to convince me that alot of this crap i have been dealing with over all these years is spinal-related. of course the dyskenesias contribute to the spinal problem as well. it is an all inclusive ordeal with a vicious cycle that is hard to maneuver around.

i am due for round two next friday. unfortunately, a person is only allowed three epidurals a year. i am also awaitng talking to a neurosugeon. meanwhile, vicadin, gabipenton and benedryl are my best friends. i am curiously watching peg's parallel of event's and wonder how many other's are having similiar issues.

Harley

There's a possibility we may have been misdiagnosed - we could be twins. With cs we may even be triplets!

http://www.dystonia-foundation.org/p...ystonia/64.php

There's a hereditary dystonia called DRD (dopamine responsive dystonia). Read about it at the above link and let me know what you think.. BTW I am NOT tremor dominate.
Peg

hey peg...

it is my belief that many of pd dxd are misdxd..reading that article sure hits the nail on the head for me. i am going to talk to my neuro about it and ask for that spinal test. when i was dxd with pd, it was assumed the only condition sinemet worked for was pd. well, we've come a long way baby!

But you sure have a different story than a lot of us. Like many of us with PD of unknown etiology, so called idiopathic PD. For starters , your pre-conditions were encephalitis, which is very uncommon in our time as being a Parkinsonism causing agent (think, after the 1918 flu epidemic). Your back injuries alone, and your so called "dopa responsiveness" pointed to your current description of what was a misdiagnosis. You say that your dopamine "went" without showing "loss of cells". That s the thing I don't understand ? If your neuro said you have evidence of brain damage in the brainstem structures, than I can see why you were labelled a PWP, however, I just don't get it that you were told that your substantial nigra was essentially intact, yet not producing dopamine.?
For the majority of us, we lose more than 80% of our nigral neurons and we start to show classic symptoms, the neck, back and all the other pain we get usually develops as a secondary result of dystonia, in all its forms. Sinemet probably helped in your overall movement disorder problems, yet focal dystopias were more than likely what was twisting your back out of whack. You are the only dx'ed PWP who I know that has "presented" a PD like condition, as you describe.. Cs

only God knows cs, and that is what i hold fast to

I think God is going to stand back and let us figure it out. The Bible says "God can be no part of evil," and if anything ever fit the description of evil . . . PD does!
Peg