Thank you everyone for your thoughts & opinions, I really appreciate it, I have done lots of research & reading over the last 2 years and really thought I had an understanding on PD, it's funny how everything can change and have you re thinking everything. The Sinemet has worked, but the Neuro who specialises in PD is questioning the progression and the way my hubby does certain movements apparently they aren't characteristic of PD!!! This neuro was our second opinion and I wish now we'd never gone to see him

We all have done things we regret. I DO make it a point to make SLOW decisions with CARE so as to avoid misery/regret. You have a whole team of people here with a wealth of study who value the EXPERIENCE we all share... so dig in...the learning never ENDS.

Thank you everyone, we will get through this. I just had to vent xox

I was DXD 4 yrs ago. Did well on meds. for most of that time. Recently it seems to have progressed a bit in the last year. I know I am going to have to up my levodopa intake. But will wait for neuro in March to decide how much. Shaking, a bit worse and balance issues have gotten worse. Many times drugs often prescribed by Pshyc docs will help improve PD symptoms. I once heard someone me my doc gave me a drug to sleep. When I take it I don't shake at all. Well the problem is the drug they gave him was something in the valium family. I doubt highly this means he doesn't have PD since the Levadopa also controls his symptoms. Just be sure to question any drugs they prescribe. I know we all want help here but sometimes more or a complete change in drug regiment is not the answer.

Well here I am again. My husband and I attended another specialist and PD Nurse appointment last week. A dose of Sinemet was ceased, hubby was tested by nurse & videoed, then he was given his medication and we were sent away for half hour and upon returning the same tests were done AGAIN and videoed, this all took two hours, I noticed the difference but according to the nurse it wasn't significant, so off to the Neurologist we went only to be told he really isn't sure that it is PD because basically he doesn't have ALL the signs & symptoms, even though the Sinemet is working!! So, we're told that he doesn't need his medication anymore, I told the specialist that I will not just stop his meds as I know what he is like off them for a length of time (not just one dose) so we can cut them back to 2 doses and see how he goes and in the mean time the specialist recommends hubby see a Private Neuropsychiatrist ($280 per hour) because he may have depression. Here we go folks, back on the merry go round that we were on 3 years ago. This has been the most frustrating & upsetting time. We just want answers, and no one has them :(

I would definitely get a 2nd & 3rd opinions. Before I was diagnosed I mentioned that I think what I have was PD because of all my symptoms but the so called Neurologists said I didn't have PD. After a couple of years I found a Movement Disorder Specialist who confirmed PD. He told me he could tell I had it as soon as I walked in. I had all the symptoms but the tremors was the last symptom to show up. I've missed a dose of Sinemet without any symptoms showing for about a couple of hours. And I had days where the Sinemet hasn't helped very much.Every day is different with PD. I wish you good luck and try to find a Movement Disorder Specialist if you can.

Its been about 6 years since I was diagnosed with Early Onset Parkinsons. What I have found out is that - at least in my area - treatment of Parkinsons Diseases is a side-line among neurologists. One of my experts specializes in carpal tunnel surgery; another specializes in treating "hot flashes" ; the third works on a surgerical team.

Furthermore, because Early Onset Parkinsons is even rarer, many of the experts actually may have little or no experience with it. .

When I recently ran into trouble with meds, I spent 3 months seeing all of the expert neurologists in the area. I got conflicting, confusing opinions from them, that did not explain my problems or provide any relief. I finally got so frustrated that I set up an appointment with Dr Ahlskog at the Mayo Clinic.

I believe that Dr Ahlskog is the leading authority on PD and PD treatment. He literally wrote "the Book on PD " {The Parkinson's Disease Treatment Book: Partnering with Your Doctor...}.

He was able to recoginize and explain the source of all of the problems I was starting to have. He was able to simplify my meds routine significantly and provided 4 page written report that did great job of explain my current condition and laying out an action plan for optimizing my treatment..

My insurance wouldn't cover this so we ended up spending ~$1000 to on airfare, hotel and $1000 on fees but it was worth it.

I believe Dr Ahlskog's book "The Parkinson's Disease Treatment Book: Partnering with Your Doctor" is one of the best books written on PD & PD medications. I think everyone with or suspect they have PD should have a copy. I also think a lot of Neurologists should read it too.

This is an interesting thread. I have found PD to be very frustrating on many levels. One of the most sensible things I have heard though, came from the movement disorders clinic I was diagnosed PD at. (That was after my primary care doc had ruled it out based ontype of tremor and lack of signs she was familiar with). The movement clinic diagnosed me with "idiopathic Parkinson's disease" and said this was the most frequent diagnosis They explained that parkinson varied a great deal between individuals. This meant that predicting its course is hit and miss at best. So we pwps live with increasing disability without knowing how or when it's going to show itself. The only thing I can think to do is to reduce stress wherever I can and keep moving as much as I can and resting when the tireds hit.

I certainly hope you find a doctor who you can work with and does make sense after truly listening to you.

Well the strain and unknowning this has all put on our marriage has now caused my husband & I to separate, psychiatrist has told him it's all in his head, past issues that need to be dealt with so guess what, I'm being pushed aside and more confused that ever :(

my dear people...please watch dr joel wallach at creflo dollar part 2 youtube right after the 28 minute mark....i'm telling you it works. any questions, ask me

I was nearly diagnosed with Parkinson's. I found a new neurologist who specialized in movement disorders and within 45 minutes discovered I have something called Orthostatic Tremor. I've tried Primidone, now on Clonipine and now the doctor wants me to have brain surgery to add DBS. My arms shake, neck, my legs are the worst. I can't stand for long without needing to sit. I can't walk well and I'm losing balance. See if you can find a doc that specializes in movement disorders.