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I saw my neurologist's NP yesterday and it was a very difficult visit. I think she's done a good job but yesterday she left me feeling wanting. I had a painful neuropathy flare-up in my leg just before the visit, which triggered an anxiety attack. I melted down in front of her which was personally humiliating. Although she clearly sympathized with what I was going through, I just didn't feel that she was proactive enough. Honestly, a pat on the shoulder would have gone a long way. It always… read more
Answer Summary
Members rallied around a question about seeking a second opinion and whether a movement disorder specialist (MDS) might be a better fit for... Read more
When my doctor first thought it was Parkinson's He sent me to a very good neurologist and asked that doctor to recommend a good movement specialist. I am now working with a team that all work together.
My primary is important because he is aware of the medication I am on for other medical issues, the neurologist handles my Parkinson's and the correct dosages of helpful medication and my movement specialist. She was the first to say i might have to 90% did. She sent me to a special hospital, 3 hours away, that had a Parkinson's wing. I has a series of test and then wait 4 hours and came back for review. The specialty of this hospital was two doctors reviewed the results separately one a doctor of the lab machines and the other a hospital doctor handling Parkinson's, three days later first doctor opinion 96% the second doctor said 98%.
When I next visited the 3 doctors PCP, Neuro, Movement the decision was I work with the three of them as a team. Movement once every year, PCP every six months as in Jan and Jul, Neuro every 6 months as in Apr and Nov.
The team approach works excellently and they have added a Eye doctor who can check for signs they could not see, my current Eye doctor agreed.
How did I do this, my Uncle had Parkinson's for 15 years [80-95} and I was part of his caretaker team, After four years this was what we created for him.
Main thing they said now that you learned how to create a team, when Parkinson's come to you Start creating a team. My diagnosis Nov 2021 my team up and functioning Apr 2022.
Hi Susan, I agree with Nancy, you should seek a movement specialist. Good luck with everything
I believe that a movement disorder. Doctor is an important move for a new one dealing with Parkinson’s personally he has helped me.
Got my appointment for December 3rd. I would hope my insurance will allow me to have both the neurologist and the movement specialist but I don't know. I don't want to lose my NP because she's very empathetic and a great listener.
Nothing to be embarrassed about Susan. PD is a tough sentence and sometimes we all get overwhelmed. Better to tell someone than keep it bottled up. And your PD pro wws a good choice👍
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