Vicky,

You are right. Dopamine Dysregulation Syndrome doesn't at all explain my Parkinsonian symptoms. I think rather what they are saying is that the syndrome can in fact make it look like I progressed when it is just the drugs. They haven't even ventured a guess other than psychogenic which mean they don't have a clue. They said as much. The doctor pointed out that there are many things that look like PD, but based on what they saw and heard of my symptoms and history it was not PD.

I asked the doctor point blank how she could reach that conclusion given that I am asymptomatic on meds. I thought this crazy because off meds I look like I have PD. Here is what they considered in their assessment:

My major symptoms emerged parallel to times of acute, intense stress. My tremor became prominent during my divorce and freezing coincided with workplace harassmebnt and sudden job loss. Still, this doesn't address why I developed bradykinesia in the first place, but rigidity barely registers for me and balance has never been an issue.

I never had a robust response to an agonist or any response to Azilect. I never had a honeymoon period with levodopa despite my incredible response to it. After 7 years of being on levodopa, my response has not waned. I still take 25/100 per dose despite what looks like progression. I never responded to an early trial with Amantadine, and the Neupro patch did nothing other than give me a drunken gait. My tremor still responds to alcohol and propanalol.

The biggest factor is that I show absolitely no clinical sign of PD when medicated. I was told by my local doc that this is quite rare and he had seen it in only one other PD patient. The NIH doctors see this as evidence that I do not have PD. They said that there is always some sort of breakthrough sign; especially, in a person who is 6 years into diagnosis.

Sorry rather long, detailed, and self-absorbed but just hoping this may be somehow helpful to others.

Laura

Laura, did your edit of the initial post in this thread remove a part in which you described your new diagnosis? That must be the case because I find no reference to it today in replies after 2:43 am this morning.
I'm excited because I may have the same diagnosis!
Robert

[QUOTE=Conductor71;1006028]Vicky,

You are right. Dopamine Dysregulation Syndrome doesn't at all explain my Parkinsonian symptoms. I think rather what they are saying is that the syndrome can in fact make it look like I progressed when it is just the drugs. They haven't even ventured a guess other than psychogenic which mean they don't have a clue. They said as much. The doctor pointed out that there are many things that look like PD, but based on what they saw and heard of my symptoms and history it was not PD.

I asked the doctor point blank how she could reach that conclusion given that I am asymptomatic on meds. I thought this crazy because off meds I look like I have PD. Here is what they considered in their assessment:

My major symptoms emerged parallel to times of acute, intense stress. My tremor became prominent during my divorce and freezing coincided with workplace harassmebnt and sudden job loss. Still, this doesn't address why I developed bradykinesia in the first place, but rigidity barely registers for me and balance has never been an issue.

I never had a robust response to an agonist or any response to Azilect. I never had a honeymoon period with levodopa despite my incredible response to it. After 7 years of being on levodopa, my response has not waned. I still take 25/100 per dose despite what looks like progression. I never responded to an early trial with Amantadine, and the Neupro patch did nothing other than give me a drunken gait. My tremor still responds to alcohol and propanalol.

The biggest factor is that I show absolitely no clinical sign of PD when medicated. I was told by my local doc that this is quite rare and he had seen it in only one other PD patient. The NIH doctors see this as evidence that I do not have PD. They said that there is always some sort of breakthrough sign; especially, in a person who is 6 years into diagnosis.

Sorry rather long, detailed, and self-absorbed but just hoping this may be somehow helpful to others.

Laura[/QUOTE

Hi Laura,
wow - this really puts you on a different trajectory! So will you stay on the same med regime and does this mean you won't qualify for the GDNF trial?
so happy to hear about this ! You may find another boost of improvement after menopause!
sharilyn

Now I wonder if I have PD. When first diagnosed I tended to lean when standing, was somewhat unbalanced, walked clumsily, moved at glacial speed, and my left arm didn't swing. A few months later I developed a tremor in my left hand. The neurologist spent 10 minutes diagnosing me, wrote an rx for Mirapex I never filled, and I haven't been to an MD since preferring to experiment with alternatives. My symptoms appeared during extreme stress (dying wife, job pressure.) I have never been stiff or rigid. That was two years ago.

Now my off state begins with jitteriness, like I took ephedrine. This is followed by walking difficulty with short steps and festinations. I have to use a walker as I fall down sometimes. Non-motor symptoms come and go but include bladder issues, constipation, sweating and thermoregulation issues, frozen shoulder, upper back pain, waking up early, fatigue, some orthostatic hypotension, but no smelling loss.

I am no longer slow, I am not unbalanced, and I don't have tremors.

Oddly, I turn into another person. My mood is bleak. I imagine death and disaster in everything. I don't want to leave the house or do anything.

Yet when I take my Hinz protocol powders (mucuna, tyrosine, etc.) all this goes away and I have to convince myself that there is anything wrong with me. I function and think normally.

I am interested in the work of Dr. Arata at www.synergyhealthconcepts.com who thinks a big part of PD issues are brought on by failure to regulate the autonomic nervous system (dysautonomia.) He fixes this, he says, with a form of CCSVI.

It could be that PD in some people is a failure of CNS regulation brought on by hormonal changes in the brain. Before diagnosis my cortisol was almost non-existent, and who knows what other changes went unmeasured. The Hinz protocol tries to balance neurotransmitters and that might be the reason for its amazing successes, in me at least. Perhaps Dr. Arata can make them more permanent.

Robert,

Nope. They are acknowledging that I have Parkinsonism but no clue as to a cause. Based on my history, med interaction, and exam, they suggested it may be psychogenic or conversion disorder. They did tell me I had Dopamine Disregulation Syndrome which came as no surprise, but this did not entirely explain away my PD symptoms.

Really? Have you just been re-examined?? I so hope that is true for you! please share your story with us.

Laura

quote... "They are acknowledging that I have Parkinsonism ... they suggested it may be psychogenic or conversion disorder. They did tell me I had Dopamine Disregulation Syndrome"... quote

So they are saying you have a Parkinism, and Dopamine "Gold Standard" Disregulation Syndrome.... but not really Parkinson's?.. and so you came close to having DBS surgery for a disease you do not have... or am I just confused?

And now you cannot be in the clinical trial?

That sizzling sound is my brain, frying.

http://youtu.be/NzlG28B-R8Y - LOL oh so oooooo true Bob!! so true - but that zone is also where prognosis loses its boundaries....where cultural beliefs lose their grip - where we defy gravity. wouldn't you rather be there than in some neat little doomsdaybox? doodoodoodoodoodoodooodoo doo

This is interesting-thinking about how the distinguishing characteristic of a pd tremor is that it worsens with relaxation - sort of like how the immune system turns on itself with arthritis.. like getting wires crossed and no ground. Your stress response was working but somehow became frozen?

I had an appointment with my neurologist today. He assured me I did not have Dopamine Disregulation Syndrome. He once more assured me I have Paralys Agitans. However, he is trying to wean me off my DBS. He is continues to turn down the stimulator and today acknowledged my Left Stimulator battery is showing signs of wear. My right stimulator is still strong.

He wants me off the DBS because they do not understand how it works; whereas, the drugs are better understood and easier to work with. He insists my symptoms are the same as they were when he started turning them down. I feel I am slowing down and having muscles seizing up constantly. He said it was what he expected. I plan to look for bad research about the Deep Brain Stimulator. It wouldn't be the first time Medtronic was caught with their pants down. Sounds paranoid, I know, but pardon me If I can't help feeling paranoid, its a part of PD.

vICKY

Laura-This is the best news I have read in a long time! I am so hopeful for you!
You are the reason I came to this site. I haven't posted in a long time for many
reasons, but this was such a great message that I had to let you know that I am
thinking of you and praying for you!
While researching, I read that one of the DDS management procedures was to decrease L-dopa. Is this something they mentioned to you? I hope that you are able to tolerate whatever lies ahead so that you can find a definitive answer! Know that you have a strong support system behind you!

Take care!
Cynthia

Also wanted to say good luck to RLMSI - thinking of you too! 😊