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Parkinsonism

Brain & Nervous System | Last Active: Aug 7 1:47pm | Replies (71)

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@louiem777

Hi @hopeful33250

The start of my journey has been eye opening and disheartening. The DAT SPECT scan is the only test that was done. When I was given my diagnosis I took my wife with me. The doctor asked me about what I was feeling and I told her my symptoms. The neurologist said I have the results of your scan and just said, “you have Parkinson’s.” That was it. It was straight forward and she saw that me and my wife were just trying to take it in. She said, “it’s not a death sentence!” My wife asked her what are the symptoms we would see and she told my wife, “we just talked about that!” Meaning the symptoms I told her I was feeling. The experience I went through with the neurologist was not what I was expecting. I was hoping for a little more help and direction. It left me hopeless and I felt lost. I think that made me determined to learn it on my own, but it would be nice to have a doctor on my side that would be willing to help. I let her know I was having pain in my legs and she said there is no pain in Parkinson’s. I also told her I was having headaches and she said they were migraines. She said I needed to go see my primary care physician for those to see what was happening. She prescribed carbidopa/levodopa for my symptoms. No physical therapy as of yet.

At this point I looked for a primary care physician and he is going to run some tests. I have the MRI scheduled and some blood tests to take as well. I really don’t want to go back to see the neurologist but right now I have to until I get the MRI and blood work back. My primary care physician said I need to get a second opinion after telling him my experience. It pains me to know that other people may be experiencing the same.

I live in El Paso Tx and I will definitely be looking into the PD Center of Excellence. Thank you so much for talking with me!

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Replies to "Hi @hopeful33250 The start of my journey has been eye opening and disheartening. The DAT SPECT..."

Hello @louiem777

Mayo Clinic has a campus in Phoenix, Arizona where they treat Parkinson's. Here is a link to information about their treatment of PD
https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/care-at-mayo-clinic/mac-20376068
If you are interested in a Mayo appointment here is the link for appointment information http://mayocl.in/1mtmR63

There is another Center of Excellence in Phoenix Arizona, the Barrow Neurological Institute, The Mohammad Ali Parkinson's Center. Here is a link to their website,
https://www.barrowneuro.org/centers-programs/parkinson-disease-and-movement-disorders/.
Finally, here is a link to the Davis Phinney Foundation website. At the top of the screen, you will find a toll-free phone number as well as an email address. https://davisphinneyfoundation.org/. They may be able to find a PD Center of Excellence closer to you in Texas.

Please continue to post as you have questions.