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Finding Out About Having Parkinson’s Disease

Parkinson's Disease | Last Active: Sep 17, 2022 | Replies (7)

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I appreciate the comments about your meds and the tremors @tedalmon. I'll be interested to hear how your follow-up appointment goes and if any changes are made to your meds.

You mentioned that it was difficult to know who is being addressed in a post. If you @mention a member by name (as I did in this post to you), that member will get a notification that you have posted to them. If you hit "Reply" under another member's post, they will also get a notification. I hope that helps in understanding the posting process.

In reading through your previous posts, I'm not sure that I know how long ago you were diagnosed with PD? In researching Primidone, I see that it is used for treating tremors, but PD is not mentioned. Do you still have a PD diagnosis?

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Replies to "I appreciate the comments about your meds and the tremors @tedalmon. I'll be interested to hear..."

Teresa, I was diagnosed at Mayo-Jacksonville in June or thereabout, just a few months ago. Since we summer in RI, I made an appointment for a second opinion at The Brown University Movement Disorder program at Butler Hospital to see Joseph Friedman MD, a movement disorder specialist. He confirmed the PD Diagnosis, based upon the datScan, but said that my Essential Tremor diagnosis from years before was still responsible for most of my tremor as they are separate disorders and that it is possible to have both, which he believes I do.

By then, I was already on the Carbidopa/Levodopa which was not effecting the tremor and is associated with various side effects in long term use. He told me to down-titrate off the Levodopa and to then start a regimen of Primidone. So far the Primidone did seem to reduce the tremor at first but the effect seemed to fade rather quickly. I have a follow-up visit to assess/adjust the dosage next week.

I did notify my neurologist at Mayo, Dr. Pena of this and she concurred with the new diagnosis of PD and ET and agreed to the change in the meds. I believe I may still be a candidate for DBS and will explore that option to control the tremor when I get back to Florida. TA