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Second Opinion

A MyParkinsonsTeam Member asked a question 💭
Brookhaven, PA

We live in Brookhaven and if permitted I would like to get a second opinion for my husband. The neurologist has not given us a diagnosis of pd but has him on medication for tremors. He is showing other systems. I don't want to wait too long since time is important .

Thanks

April 30, 2019
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A MyParkinsonsTeam Member

I guess if meds given to check responsiveness it seems right, but with symptoms and no diagnosis I would be looking for a movement disorder specialist perhaps?

May 4, 2019
A MyParkinsonsTeam Member

My husband starting seeing physicians back in 2005 for what we now know were symptoms of PD. In 2010 we realized, after getting punted from Neurology, to Cardiology, to Pulmonology, back to our Primary, to Urology, back to Neurology, to Cardiology, to Pulmonology, on and on. Tests were abnormal, but not abnormal enough. In the meantime my husband didn't have the tremor, he was losing cognitive function, having balance and weakness issues causing frequent falls and going from a cane to a walker to a wheelchair. I started doing my own research. I began to suspect PD. However, the 5 Neurologists we saw spent less than 10 minutes with him, NOW in a wheelchair, and punted him. So, when I realized his Night Terrors were in fact REM Sleep Behavior Disorder, I put a list together of his various Medical Problems, went to see the Neurologists, went down that list and noted that over 75% of the many medical problems he had were symptoms of PD. I THEN REQUESTED THE NEUROLOGIST TRY HIM ON A MONTH OF PD MEDS. The side effects of Sinumet are not that bad, it is not expensive and is suggested that physicians who suspect PD do just that. The Neurologist agreed but said if we were to try the meds he wanted to do the DAT Scan. 13 Years of physician visits, many specialists, and it was in fact PD. So, if you suspect PD, ask your Neurologists to please try your loved on a month of Sinumet. If they have PD, it will help. If they do not, It will not help. The dose my husband's Neurologist started him on was 100/25 [[treatment:Levodopa/Carbidopa:55d534f51fcaa397470006dd]], 3 times a day. It took several weeks. It helped. However 13 years and in a wheelchair, there is much catch up. Good Luck!

May 11, 2019
A MyParkinsonsTeam Member

Yes, I think that doctors are somewhat reluctant to name diagnosis since it is all so subjective. My husband already is disabled from brain bleed at the age of 50 (twenty years ago). I saw so much decline and I didn't understand why. It was slow and irregular so it took my a while to start having suspicions of Parkinson's. He also was started on meds without diagnosis. I think they want to see reaction to medication before settling on diagnosis.

May 1, 2019
A MyParkinsonsTeam Member

Thanks

May 11, 2019
A MyParkinsonsTeam Member

I Thought it was helpful to see a movement specialist. Was referred to University of San Francisco. A team of specialists asked lots of questions which aided them in making a diagnosis.
I did not read your previous note so I am unaware about some of your situation.
I wish you well.
Also, I do think there is a lot of value in hearing what is going on with others. I can use the help and I watch for things to help others as this is such a diverse illness.

May 10, 2019

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