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July 25
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Answer Summary

Members came together around the topic of dizziness and spinning vertigo as it relates to Parkinson's disease, sharing that it is often an... Read more

Members came together around the topic of dizziness and spinning vertigo as it relates to Parkinson's disease, sharing that it is often an autonomic symptom of PD itself rather than a separate condition. Several members described experiences with orthostatic hypotension, BPPV, and medication side effects like Gabapentin and Azilect as contributing factors, with one member finding relief by lying completely flat until the dizziness passed. A recurring theme was the importance of seeking a Movement Disorder Specialist over a general neurologist, with many noting the longer wait times are worth it for better, more focused care.

A MyParkinsonsTeam Member

Movement specialists are so hard to find and get in to see, but I've heard much better things about them than the neurologists. I'm trying to get into one in Denver which is a few hours roundtrip. A friend of mine was diagnosed with PD for eight years. When his neuro left the facility they put him with a movement specialist - he does not have PD! It's something entirely different with similar symptoms. Glad you found one!

August 7
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member, I meant the statement about a backup as rhetorical support for why he should pester the doctor's office.
Please understand that I'm not upset with you, but to clarify my suggestions to @A MyParkinsonsTeam Member:
I meant none of the above as a joke and I understand the seriousness of the situation. My last appointment with my neurologist accomplished nothing. She spent the entire visit insisting that I was lying. My Primary Provider had asked on 2 different occasions if anyone had discussed a certain condition with me that had been mentioned in my records by some previous doctor. The second time, I became curious. Please realize that I didn't just Google the subject. I earned a Bachelors degree in Cognitive Studies in 2019 and still have access to my University library, so I researched the aforementioned disease. The information I found made sense. If I did have that condition, it would explain why I have had some Parkinson's symptoms since childhood. I asked my Primary Provider how to find out if I have the disease or not. I was told to discuss it with my neurologist. My neurologist acted like I pulled out of a hat, the name of the rare condition with which I wished to discuss. She refused to believe my report of how I learned of the disease. To top off the nonproductive visit, my neurologist is expecting a baby and therefore my next appointment would be scheduled for 10 months out, which put it in March of 2027! I sincerely congratulated her. I understand better than many. I have given birth 11 (yes, eleven) times to healthy babies. I have no desire to deny her any of the maternity leave she desires. It would not bother me if she decided to concentrate on being a full-time Mom for the next 20 years, but I didn't choose to have Parkinson's and I can't keep it from consuming my life for 10 months. Since she can't arrange a substitute while she's on maternity leave, combined with accusing me of lying, I am trying to get a new neurologist, myself.

July 31
A MyParkinsonsTeam Member

Hey I'm getting a CT scan on Tuesday , not for dizziness . Sometimes I get dizzy , but I know it's part of having Parkinson disease , mine is for pressure in my right inner ear , have had of problems with it and they have run every test on me , so now it's time for a CT scan . Hopefully both of are scans will give us 🙏 some answers . Be strong and keep fighting Cindy ..

July 25
A MyParkinsonsTeam Member

Now you're talking , remember that a neurologist doesn't have training for Parkinson disease , and yes unfortunately you usually have to wait for 6 months to get an appointment for a Movement Disorder doctor , but it will worth it . Like I said it's not just a doctor visit , my appointment usually lasts at least two or more hours , the downside is we have to drive four hours to get there from home and that the next day you are going to pay for it ,with fatigue and stiffness , but it's worth it , the only part I don't like is the heel to toes walk , it's more like how heel to fall for me . So for all of you that are seeing just a Neurologist do yourself a favor and find a Movement Disorder Neurologist , you can thank me and God later for the blessings . And remember to pray and keep fighting because Parkinson disease is not who you are , it's just a part of you ...

August 1
A MyParkinsonsTeam Member

I am leaving here in two days. I got an appointment in December with a movement disorder specialist in Florida. Most doctors there don’t take new patients. Whether in the U S, or any other country, you shouldn’t be sick.. It cost me a lot just to be confirmed to be a PD patient. I only can hear that they cannot make a long term treatment plan here since I am leaving soon. A special situation.

July 31

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