Dear Terri,

I also was told by a neurologist that he felt I had delayed stress syndrome. I was abused as a child. The only way to convince your doctor you do have PD, (neurologists have been known to make mistakes and have big egos that will not allow them to admit it) is to try the following:

1- Ask the neurologist to put you on a trial of sinemet. If you show immediate improvement in your symptoms, you have something to make him recant his diagnosis. Sinemet is the single most convincing drug that works for person's with Parkinson's or Dopa Responsive Dystonia. Go to a neurologist for a second opinion and ask him to allow you to try it.

2. For hard to diagnose patients, an F-Dopa Scan is used and if it shows dopamine is not taken up by the substantia niagra then it will put you in the position of making the doctor prove you don't have PD. Ask your health insurance if they will pay for it. Mine did.

3. Have a genetic test done by Athena Diagnostics, Inc. Ask your health insurance if they will pay for it. Mine did. Any lab can draw your blood and send it to Athena Labs. They are the only diagnostic lab that will perform this test with a doctor's order. I was informed by a neurologist at the Mayo Clinic that 50% of patients with YOPD have a mutation in their Parkin gene.

Don't get "bummed!" If you know in your heart that your symptoms are not in your head, but are physical symptoms, gather as much evidence to prove your illness is real. Get angry and educate yourself and your neurologist on how to manage your health. Your neurologist is not a "God" and is as capable as making a mistake as anyone. Neurologist go by experience and tend to slot patients into categories. Don't let yours get away with it. Make him/her see you as a person and stubbornly challenge him/her by proving you know your case better than anyone and make him see your individuality. If he doesn't like being proven wrong, he is a bad neurologist. Get another.

Love,
Vicky