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@hopeful33250

Hello @cindylb

I can't say that I've ever heard of that particular symptom before, but Parkinson's affects everyone differently. Perhaps someone else in our group will be able to relate to it.

You mentioned that his doctors are not sure about his diagnosis. Have they ever tried him on a low dose of Sinemet (Sinemet is the gold standard for treating Parkinson's)? Often times if a patient responds to the treatment that helps to confirm a diagnosis.

Teresa

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Replies to "Hello @cindylb I can't say that I've ever heard of that particular symptom before, but Parkinson's..."

I agree that a trial with Sinemet is a good idea but success or failure will not confirm anything. I was born with genetic dystonia and Carbidopa-Levodopa (Sinemet) works like a miracle for me. Yet it does not work for all types of dystonia. So Sinemet works for some movement disorders and not for others. Therefore, this will be a process of elimination and confirmation. If the Sinemet works or helps that does not confirm or deny Parkinson's; however, you will have something that helps. A trial period of using the drug supervised by a neurologist will provide a data point. The drug has been around a long time and is very safe. I have been taking it for YEARS otherwise I wouldn't have had any life at all. Remission of symptoms coupled with a neurological exam is the only way to diagnose neurological, movement disorders or neurological/muscular problems. Then narrowing it down is required. I know because I have lived successfully with dystonia for 74 years and it took a while to finally organize the treatment plan that worked best for me. I know others with dystonia and nothing works for them. My dystonia gradually progressed from tripping, falling and clumsiness and then to the inability to write script and color within the lines as a kid to trapezius twisting, head twisting, tremors and difficulty breathing and speaking simultaneously or the way most people take speaking and the ability to talk and walk for granted. I am not describing being winded but rather gulping between sentences. The carbidopa-levodopa enables me to function without any symptoms at all and I do not have Parkinson's. Good luck to you.