I WOULD WANT FIRM ANSWERS. ARE THEY GOING TO D/C HIS SINEMET? SPECIALISTS ALL OVER THE COUNTRY DISAGREED ABOUT A FRIEND'S DX AND GUESS WHAT? SHE WAS CUT TO HALF THE DOSAGE AND COULD NOT SPEAK OR SWALLOW. AFTER BEING ADMITTED SHE WAS GIVEN THE FULL DOSE AGAIN IN AN ATTEMPT TO GET HER BODY TO FUNCTION. DIDN'T WORK. SHE DIED. YES INDEED I WOULD WANT SOME ANSWERS. PLEASE DO NOT ALLOW ANYONE TO JUST YANK HIM OFF THOSE MEDS !!!

Hey there, I won't be letting them do anything unless it is in a hospital. I know how he is when he is off the medication as I have done this to him myself and it was cruel. It's just hard when you think you have the answers. He is to have MRI's again, see a psych for PTSD, when he was first admitted to hospital in 2012 he was already on antidepressants, he was taken off these and not re started, if they thought PTSD was the cause, why wasn't he put back on the antidepressant meds and seen by a psych then, all they did was pack him up and send him back home and now we have to go through it all again, am I angry, yes I am.

Not to mention all the blood tests, poking & prodding, he is a wreck at the end of it all, mentally & physically.

Sweetie I'm so sorry. Keep learning all you can. There are a lot of Savvy people here but none of us seems very satisfied with the current treatments.

OH & my friend was in a hospital when he died, sadly but I think trying to wean her off the drug then doubling it back to full dose in one leap. did her in.

The Neurologist wants to do a "blind" study in hospital, unfortunately the hospital this has to be done in has a shortage of overnight beds so it may not be until sometime in 2015. We live 3 hours drive away from where all these testings & appointments are to take place and it's not all done at the one appointment, some specialists forget how far we are away from the city

I am so sorry you and your husband are going through all of this very serious trauma. I can understand how scary it is to be diagnosed and then to be told by the person doing the diagnosing that it was wrong. You didn't say why they do not think he has PD but I too would read up on it. I know this stuff is boring, believe me I know. A lot I times I do not understand it but I ask God to help me understand what I am reading and that always works.

It is really hard when you are not close to your doctors and you are making that long trip. Very aggravating. It seems like they ARE treating him like a guinea pig. I know I would want to step back and say hey, wait a minute, this is not right!!!

I would ask my dr. to give me names of drs. that I could go for a second opinion. The dr. on WebMD says that everyone has a right to a second opinion and that in keeping with medical protocol to ask the present dr. for names of other doctors to go for a second opinion. If the second opinion doesn't seem right then pick your own dr. for a third opinion. I know their feathers get all out of shape when you ask them for the second opinion doctor but you have a right and if he doesn't name one start looking for one yourself. PD foundations in your country would have names of PD specialists.

For instance, my brother passed at 50 with lung cancer. I got it in my head that I needed to get checked out so I talked my dr. into writing a script for me to be CT scanned by an imagining facility related to a university. I had marks in my lungs related to a very common fungus found in the mid-west US (I think it was a fall into a frog pond when I was about 6-8 years old). The dr. at the imagining facility started having me come back on regular visits all on his own. This happened quite a few years ago so it is hard for me to remember. LOL After about 3-4 scans I complained to my reg. dr. what is wrong. My regular dr. then sends me to a lung surgeon to find exactly what the marks are. I go for initial visit and take him the pics. of my lungs and the surgeon calls the imaging dr. When I went for the second visit the surgeon says that the imagining dr. had started some kind of "study" on his own (my thoughts were that my insurance co. and I were financing) and was not happy the surgeon had got into the pic. The surgeon told me exactly what the scars on my lungs were and that there was no danger.

So I got myself into a state university hospital now with my neuro and I am kicking myself in the head - Why, did I do it. Every facility that we deal with has its own agenda and sometimes they feel they are doing the best for humanity. I like the phrase that is used so often in PD circles when it comes to the meds: Does the benefit of the meds outweigh the side effects. Well, yes, until the side effect of the med becomes a disease in itself. Now I got double trouble or more.

So I have to keep a paddle in my own cure pool and I do not have the luxury of just floating along leaving it unattended because although they take oaths . . .

Good luck, please let us know how it goes.

usually if sinemet works its PD...thats kind of a standard diagnostic tool.......


BT

teesha43, Something sounds fishy here. If he was diagnosed 2 years ago what has changed in his symptoms. If t6he sinamet controls tremors it is most likely PD. What are his symptoms? what other meds is he on? Good luck and good health, Alex

Apparently the drug in Sinemet is used in many drugs, pain meds, antidepressants etc and because the symptoms havent progressed according to the Neuro and my hubby hasn't deteriorated more then he seems to think that is isn't PD (apparently he should be in a wheelchair because younger sufferers deteriorate faster), we're just so confused and anxious about everything now :(

There is no timeline for the rate at which symptoms progress by how young you are when diagnosed. Everyone gets some unique symptoms. No two pwp have the same rate of progression or combination of symptoms or combination of meds.

sounds very strange ...........also levodopa is found in only a select few meds....not in all sorts of stuff. you can also go for a couple years without major progression....so thats not an indicator. if sinemet works id be awful curious to hear a second opinion.....


peace

Brer T

If Sinemet works, it's PD. Also, just because one physician doesn't believe it's not PD doesn't mean it's true. My mother lost two years because first one and then a second neurologist (one of whom still maintains he's a "PD specialists") told her she didn't have PD. They shuffled her around to all sorts of other physicians who ran lots of tests (and made lots of money off her), yet none had a diagnosis for her or any sort of treatment and relief for her symptoms. Finally, she underwent a battery of tests at the Mayo Clinic in the distant city where I lived at that time, where she was diagnosed with PD and immediately placed on Sinemet. It's been a miracle drug for her right from the start and continues to be even at this advanced stage now.

If possible, find a reputable movement disorder center (MDC), even if it means having to travel a bit, whether or not it's affiliated with a hospital, so your husband can undergo very thorough testing by real experts in the diagnosing and treating of movement disorders. The center will give you plenty of reading materials as well as helpful advice and should be able to also give you referrals to neurologists in your area who have significant experience treating people with PD. They can all become part of your husband's medical team or, once you find a good local neurologist who is truly knowledgeable with PD, drugs and therapies, you can stop going to the MDC, especially if the MDC is too far away. As the disease progresses, it'll become increasingly more important to have a competent local neurologist as travel becomes more difficult. From my/our experience, finding the right neurologist is utterly critical. I'm grateful that we found the one who's been treating my mother; he's one of only a handful of physicians whom I trust and respect.

I wish you and your husband all the best on this long and difficult journey.

I was told my friend got a "no PD DX" from Mayo, so thanks to these lovely new medical records-- who is going to argue with them? She suffered more than anyone can know from there on out and it was a welcome day when she stopped the horrid agony. BE on top of it. I am not trying to frighten you, but motivate you.

HEY BRER you look so HEALTHY....

HEY that is HEAL and THY.... hmmmm.

google L Dopa