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Do they really know best?

A MyParkinsonsTeam Member asked a question 💭
Stoke-on-Trent, UK

I'm starting to think my specialist has no more idea what will work for relief of my symptoms than I do. Anyone else?

September 7, 2024 (edited)
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Answer Summary

Members resonated deeply with the question of whether specialists truly know best, sharing frustrating experiences of feeling dismissed,... Read more

Members resonated deeply with the question of whether specialists truly know best, sharing frustrating experiences of feeling dismissed, misdiagnosed, or receiving inconsistent care from neurologists. Several members emphasized the importance of being your own best advocate, including researching medications, checking for drug interactions, seeking second opinions, and communicating openly with medical teams about what is or isn't working. A recurring theme was that managing Parkinson's often feels like trial and error, with exercise like boxing, yoga, and cycling frequently mentioned as meaningful tools alongside medication adjustments.

A MyParkinsonsTeam Member

This is also part of my worry when doctors are so quick to treat anxiety, almost above all else; I swear that all they are doing is making us worry less about our symptoms so we bother them less.

September 7, 2024
A MyParkinsonsTeam Member

Nigel I agree that so much is a guessing game when it comes to medications . I am fortunate to have a medical team that listens to me and if I question a medication or if it is helping I will stop taking it with their knowledge. I don’t believe in taking one thing to “fix” the side effects of another. Being my own best advocate has served me well.
🌈TheaD

September 7, 2024
A MyParkinsonsTeam Member

I had an excellent neurologist who unfortunately relocated. The next one I saw, was also a good neurologist, but very expensive! I went to a third one who came highly recommended.
Despite it being the first time that he saw me, he didn't even do an examination. He asked me why I was there and if I want him to change the medication. I was there for a followup! He then proceeded to tell me to only come back if something serious happened or the medication doesn't work anymore.
Six months later I started falling more regularly and went back. He asked me very rudely what I was doing there!!! Now I'm very hesitant to go see any neurologist again. As Nigel says, do they really know as much as they pretend to?

Bear in mind that, as we don't have NHS, this rude character is a private practitioner!

September 7, 2024
A MyParkinsonsTeam Member

I feel like it is all trial and error for me,no one knows better than you,with all the different meds I take I learned which ones work together and which ones don't

September 10, 2024
A MyParkinsonsTeam Member

Nigel: Absolutely. My husband and I were just saying that it’s mostly trial and error to treat some symptoms. When he told one neurologist he was awakened by stomach cramps, the doc admitted he couldn’t explain why.

September 7, 2024

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