7 years ago I was diagnose with having Parkinson's. I've just recently (5 months ago) moved to another province here in Canada and have been told by my new Neurologist, that I have something but it's not Parkinson's. I must admit that the last time I saw my Neurologist in my home province, he was stumped also and actually said that i wasn't showing any signs of Parkinson's. There 4 signs they use as a criteria to diagnosing someone with Parkinson's and I don't even have one of them. I know that I've had many of the systems of Parkinson's before and I many more than four (4), but what the heck is going on? I thought that I was feeling good because of the drugs and said so to my Doc, but he said I've should of been getting worst over the years not better????What?! He tested me quite extensively, and Zilts! Nada, no symptoms of Parkinson's, not one!

Today, I'm going for an MRI and I'm glad I am but I can't believe the crap I went though, being wrongly diagnosed and I'm hooked on drugs. I'm mad at myself. In my later years of 64 (diagnose 58) must be getting soft for not asking for a second opinion at that time. My own fault...

This new Neurologist has advised me to start cutting back on my Sinimet and to keep a record on how feel. So far it's not to bad. There are no Parkinson's systems showing up and I hope it stays that way, but it sure is hard coming off the drugs.

Advise for the newbies that get diagnose with any kind of debilitating disease, please get a second opinion.

thank you for listening.
Keep Well

Claude

While it is highly possible that you do not have PD, you could have Parkinsonism meaning you do not have PD itself but one of the many disorders that is similar. They are all treated the same way, Sinemet. Are you seeing a Movement Disorder Specialist or just a Neurologist? Here in the US, most neurologist (especially in small towns) do not see enough PD to be able to diagnose it properly.

Just my .02 cents

Perhaps you can go to the NIH in Bethesda, Maryland, for a second opinion. I met 2 people from Canada the last time I was there.

More info can be found here:

http://www.pdplan4life.com/NIH-parkinsons-disease.htm

Jean

GregD,

Nice to hear from you,

You might be right in you assumption, but for one thing that I might not of mentioned in my post, I don't have any of the Parkinson's symptoms that are associated with this disease. It weird. For the last 7 years I suffered with Parkinson's and it's symptoms and took the appropriate medicine to help me function as normal as possible. Now, even as I cut down my Sinemet, I don't seize up, nor so I Twitch,nor shake. The only effect I get is my breathing gets shallower and quick. Like I said "Weird or What"?

I know people won't believe me, but I think it may have to do with supplements that I've trying or/and a combination of both the Supplements and the Drugs. Time will tell.

Any way, one step at a time and we'll see how things turn out, I'll keep this forum advised if you want me to.

Keep well.
Claude

Jeanb, thanks for responding to my post,

I might take you up on it if I feel it's needed. I'm now in the process of getting a second opinion, so let's see where it takes me and how I feel.

keep well,

Claude

GregD,

Thanks for responding,

As of right now, do not have any symptoms of Parkinson's. I did 7 years ago and I was in bad shape. It's really weird, but I have feelings on what might of have of happened but I'll keep that for myself for now. I'll keep t his forum advised.

Keep well,

Claude

Claude,
Please do keep us informed. Every little bit helps to put this puzzle together.

OK I will keep you informed.

Keep well,

Claude

I wonder if you could give us a little more detail about how you are reducing medication, and how long you have been doing so. I was in a similar situation re: neurologist a few years ago, unlike you I was taken off cold turkey and by day five the PD symptoms returned. Today they break through the medication quite obviously, but I am several years further down the line. Like you I was told that there were no signs of PD visible. I have the rather unsatisfactory label of possible Parkinson Disease - mild parkinsonism, which quite honestly does not describe the nuisance and plain bother that my condition causes me! It also means that I never get looked at from a human perspective, more like an as yet unidentified species!

But I digress - I hope that your condition is truly not PD, and that you come off the medication and are able to live without this label and the inevitable sticky issues that come with it. The best of luck as you explore the potential of a PD free life.

[QUOTE=lindylanka;823405]I wonder if you could give us a little more detail about how you are reducing medication, and how long you have been doing so. I was in a similar situation re: neurologist a few years ago, unlike you I was taken off cold turkey and by day five the PD symptoms returned. Today they break through the medication quite obviously, but I am several years further down the line. Like you I was told that there were no signs of PD visible. I have the rather unsatisfactory label of possible Parkinson Disease - mild parkinsonism, which quite honestly does not describe the nuisance and plain bother that my condition causes me! It also means that I never get looked at from a human perspective, more like an as yet unidentified species!

But I digress - I hope that your condition is truly not PD, and that you come off the medication and are able to live without this label and the inevitable sticky issues that come with it. The best of luck as you explore the potential of a PD free life.

Hi lindylanka,

First I have to tell you that I understand how you feel about You telling your friends that you have PD and then they look at you as if your trying to pull something over their eyes. It's not a good feeling at all.

Here's what I was taking as off 2 months ago.

APO-LEVOCARB 100/25 2 (every 3 hrs)
APO-SELEGILINE 5MG 2 a day
AMANTADINE 100 MG 3 a day

My Neuro advised me to take my doses every 3 1/2 hours. The first day I took 3 1/2 hours between all my doses, but that didn't work so good, as I came off with a bang! I had trouble breathing and I felt like heck. It took 2 days to get me back to what I called "normal". Starting again, I took only my second dose 3 1/2 hours. I was taking 5 doses a day. I'd take my first dose at 7am, second 10:30am, third 2pm, fourth 5:30pm and fifth at 9pm and that was it for the night as I slept pretty well all night. I did this for the first 2 weeks and then weekly I added a 1/2 hour to my in between times for my doses. Yesterday, I added another 1/2 hour to my second dose (7am to 11am)and left the other doses at 3 1/2 hours for now, till I can handle the first 4 hours with ease. This is my second day on the 4 hours and the only symptom I have is difficulty in breathing. Something is affecting my muscles from working properly and that why their going to put me through a bunch of new test.

When using the Drugs and I'm "on" I have no problem breathing at all. I could tell when my drugs take effect by my breathing patterns. Breathing normal "on", quick short breaths means I'm "off". The breathing part only started about a 1 1/2 to 2 years ago.

Getting back to how I'm trying to ween myself off the drugs, is slowly, go by how I feel, every morning. Just like the Alcoholics say "One Day at a Time". I figure it took 7 years to get me hooked and it's going to take me a while to get off those darn things. Don't forget I've got three drugs to clean out of my system. I know I have to be patient and sometimes I feel so good that I forget a dose, that's bad, when I come off after missing a dose, is very hard. Then I have to take days in getting the drugs back into my system so I can continue weening off slowly. But you learn.

I'm stubborn, I've always fought being sick and this is just another battle and I will, win it!

If there's anything else you would like to know about my condition or how I'm handling it, please feel free to ask, but excuse my grammar, that's one subject I didn't do well in school and now I regret it.

So, hang in there
and keep well

Claudeh