Connect
← Return to Have you tested positive for synucleinopathy?
Discussion
Have you tested positive for synucleinopathy?
Parkinson's Disease | Last Active: May 13 7:12am | Replies (12)Comment receiving replies
Hello @sescorp0834 and welcome to Mayo Clinic Connect. It sounds like you have been through a very arduous journey to seek proper care.
You will notice that I have moved your post into the Parkinson's Group and also included it in the Neuropathy Group. It sounds to me like the Synucleinopathy symptoms and lack of conclusive diagnosis is your main concern, so the primary group you will see it listed in is Parkinson's.
I wanted to share with you that Mayo Clinic has a lab and doctors who are focused on this disease area. Here is some additional information if you'd like to learn more:
- YOUNG-ONSET PARKINSON'S DISEASE AND SYNUCLEINOPATHIES: RODOLFO SAVICA:
https://www.mayo.edu/research/labs/young-onset-parkinsons-disease-synucleinopathies/overview
Are you open to another opinion?
Replies to "Hello @sescorp0834 and welcome to Mayo Clinic Connect. It sounds like you have been through a..."
Connect
YES, 100% I am open to ANY information that may lead to answers. So thank you for all of your input! I literally have never had ANYBODY even have a simple opinion. So I am grateful that you included me in both groups. I actually found a neurologist actually 10 minutes from my home. Central Texas Neurology, Dr. Peckham. The only problem is they only provide diagnostic help and NO TREATMENT OPTIONS or ANY OTHER OPTIONS. She is positive I have Pure Autonomic Failure (PAF), but we don't know if it is the type that will advance into Multi System Atrophy (MSA). MSA is terminal, but PAF just makes life suck. There are less than 5000 people in the entire country that have either. She told me that either way, rather I have PAF or MSA, I will get either Parkinson's or Dementia or Both. There's no way to know until it either happens or I'm in autopsy. So thank you for all the information and adding me to the 2nd group. If anybody ever has any questions or suggestions or just a hi, please feel free to do so.