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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Sorry If This Question Is A Bit Long Winded. I’m A Newbie To This Group As Well As A Newbie To PD Diagnosis.

Sorry If This Question Is A Bit Long Winded. I’m A Newbie To This Group As Well As A Newbie To PD Diagnosis.

After a recent EMG, an Orthostatic Tremor diagnosis became confirmed this past May (2018). I lived with that movement disorder OK because when the tremors which were caused by standing still started to affect my legs as well as present balance issues, all I had to do was either sit down or move. I chose to move – playing racket sports or other physical activity at least 5 days a week. In June I got the results of a DatScan (via e-mail!) which pointed out a dopaminergic dysfunction “compatible… read more

A MyParkinsonsTeam Member said:

Hi Marty, I was diagnosed 3 years ago with PD. I've chosen to wait until the symptoms are affecting my quality of life before taking Caba-Leva type drugs. I currently take Azilect, which is said to slow the progression of PD and Requip for RLS. I've also been going to Rock Steady Boxing classes for the past 2 years which has also helped to slow the progression

posted about 3 years ago
A MyParkinsonsTeam Member said:

Sorry you could not get the DatScan. I'm not sure I really benefited from it, since the results were "compatible" with Parkinson's but not definitive. I know I have Orthostatic Tremor for sure. I'm in limbo. I'll bite my tongue and stay away from any comments about insurance or health care.

posted about 3 years ago
A MyParkinsonsTeam Member said:

Have you considered Cord Blood Stem Cell Therapy for your hip, instead of going the replacement route? This past Feb 14th, 2018 - I took the leap of faith and had both of my knees that had been bone on bone for past 20 years done..... along with my right shoulder. I was taking 2 tabs of Norco 7.5 mg, and 6 tabs of Aleve, just to barely make it through the day, and had been taking for over 10 years... One of the requirement of Stem Cell injections are to stop all pain meds & all over counter anti inflammatories... I did, and haven't looked back... Just passed the 6 month point, and have NO pain and can walk on it without problems.... My significant other, had both her shoulders done, went from pain all the time to gaining significant range of motion, and before had trouble lifting a cup of coffee, to having no problem now to work in her garden & sewing quilts.... I'm a believer in this Regenerative technology

posted about 3 years ago
A MyParkinsonsTeam Member said:

Like yourself, it seemed like it took way too long to get the DatScan that would indicate dopamine dysfunction. I'm kind of angry about the delay in diagnosis. I'm over that now and will rely on advances in treatment to make this journey more tolerable.

posted about 3 years ago
A MyParkinsonsTeam Member said:

Very useful information Alan. Thank you.

posted about 3 years ago
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