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Originally, h was told he had Primary Progressive Aphasia, , having had a MRI which didn't show much., but he struggled with words Then after a three hour test with a neurologist, she concluded it was actually Parkinsons He has developed an extremely bad tremor in his left hand, and rigid in the right He is having balancing problems , he has vision -spacial problems, his handwriting is so small as to be illegible, and when he reads, he skips over words. He can't drive, and he has been… read more

August 28, 2022
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A MyParkinsonsTeam Member

Get a good Parkinson's neurologist. Most people have PD for about 10 years before its official. Sinemet is not the only PD medication. I was a geriatric nurse for 33 years and I didn't know this BUT Mirapex is also a PD med! Who knew? Not me! I was on Mirapex for years for Restless Leg Syndrome (RLS). It kept getting worse ( this was before PD) I was at the max dose for RLS. Then after Dat Scan had PD, first PD neurologist was lousy found another one. He said that while the Mirapex dose was at the max dose for RLS it was also at the therapeutic dose for PD. So we had been treating PD before we even knew I had it and it was also hiding the symptoms. So get better PD neurologist, switch meds. I also agree that your doctor should welcome a second opinion but unfortunately in reality they don't. A lot of them have think they are the final word and if you have one like that, RUN AS FAST AS YOU CAN TO ANOTHER DOCTOR!

August 28, 2022 (edited)
A MyParkinsonsTeam Member

I had to see 3 neurologist before I was properly diagnosed. I believe what you want is a movement disorder specialist. Preferably one affiliated with a major university and not just an office in a strip mall.

August 31, 2022
A MyParkinsonsTeam Member

Have to have a little bit of a sense of humor!

August 29, 2022
A MyParkinsonsTeam Member

Just to add to what others are saying, whi ch is good advice, I would seek a 2nd opinion and understand a DAT Scan is only effective at the time of the scan. Your loved one may have PD but more advanced and rapid progression that is characteristic of PSP or MSA (progressive supernnuclear palsy or multiple systems atrophy). With all due respect to your current Neurologist, he or she should not be opposed to a second opinion.

August 28, 2022
A MyParkinsonsTeam Member

I progressed in much the same way. I was in really bad shape. Then I did LSVTBIG Program and got better. Then I did Rock Steady Boxing and I got so good you couldn’t tell I had Parkinson’s.

August 28, 2022

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