I got diagnoses with pd, about a year and... - Cure Parkinson's

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I got diagnoses with pd, about a year and a half ago.

linsoko profile image
11 Replies

I went to the neurologists last week and he said he believes I have DRD, Dopamine-responsive dystonia , not pd. I am not sure if I should get a second opinion. My walking is very poor and my mouth grips tightly.. Does anyone have this or should I get a second opinion?

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linsoko profile image
linsoko
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11 Replies
Dennis profile image
Dennis

I went to 2 doca who said I did not have PD. Mayo is the one who told me I have PD.

~~~Dennis

If you can I would I got three . I went to the Mayo for the third one !

hilarypeta profile image
hilarypeta

My advice is try john coleman and howard lefke? Etc...naturpaths who have cured themselves. I am 6 years on and have avoided medication going to nutritionists, homeopaths, kinesiologists etc..if i followed all their advice I would be better!

The moment i was diagnosed i started developing symptoms. Neurologists i have seen always get things wrong and you end up feeling worse!

Gi gong yoga snd diet is the most important thing with a positive attitude that you are getting better. !

1 and a half litres a day of water..relaxation, meditation etc..Good luck!

grammieof3 profile image
grammieof3

If you can get another one what will it hurt? I've also been to mayo clinic

linsoko profile image
linsoko in reply to grammieof3

what is mayo clinic?

jonroberts profile image
jonroberts

Mayo Clinic is probably the best place to go for diagnosis of any type in the US. There is one in Minnesota and in Phoenix, Arizona. If your insurance covers it, have them examine you for a second opinion!

chris3274 profile image
chris3274

My neuro said I either have DRD or PD. I am scheduled to get a DatScan. This will determine

if I have PD. What I know of DRD is that it is a childhood disease. Progressive to a point and

then stops. Adult onset is basically unheard of. I had cataracts at 25 and that was unheard of

also. Do you have any other symptoms? Very hard for me to walk. Tip toes helps. Left leg

initally but now it is affecting my right as well. No tremors. Just difficulty walking.

linsoko profile image
linsoko in reply to chris3274

It is very hard for me to walk also, afects left leg turns in ward and foot curls up, also it affects my hand and mouth, very painful.. I was having tremors until i went on the pd medicines..

olpilot profile image
olpilot in reply to linsoko

Generally if PD meds work it's PD from what I've been told, I have Dystonia in my legs and feet, Amantadine has worked wonders for that.

chris3274 profile image
chris3274

Oh boy. Isn't there any pain meds they can give you that doesn't knock you out?

My left leg starting dragging a bit about 3 years ago. It is now much worse and has

moved to my right leg. Very scary. I am on sinement. This worked for awhile but

now I am not walking as well. Maybe my dosage needs to be increased.

I have never had tremors. That's good and bad.

I have done so much research on the internet that now I know a little more than I

care to know.

I have found a treatment that is going into phase 11 in 2013. So far, 2 stages of

clinical trials wew completed and results have been very positive, for safety and effect.

It is called ProSavin Oxford BioMedica is the research co. located in UK. Paris is

involved. They did have a company based in San Diego. Probably to help with

FDA prodedures etc. Closed it down to tighten the money. Google ProSavin.

You will be surprised. I am hopeful that this will be available soon. Maybe 5 years.

Meanwhile, PD research is really growing due to the increase in diagnosis. Too

much money spent for meds., care giving and hospital. That always gets attention.

Foggyme profile image
Foggyme

Spam - reported to admin and HU

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