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Parkinsonism

Posted by mvanstem @mvanstem, Feb 6 9:31pm

Anyone else diagnosed with Parkinsonism (advanced testing) but no diagnosis of Parkinson’s, nor MSA, nor PSP nor Lewy Bodies. Like to talk? Curious about other routes Parkinsonism can take

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 7 1:47pm
In reply to @mvanstem "My most noticeable symptom is my imbalance and drunk like walking but what bothers me the..." + (show)
@mvanstem

My most noticeable symptom is my imbalance and drunk like walking but what bothers me the most is how my vision has been affected: nystagmus, oscillopsia and double vision.

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@mvanstem
Based on the symptoms you've mentioned, I'm assuming that you have seen a neuro-ophthalmologist. If not, this would be a good place to start. I would encourage you to look at the following discussion group as many of your symptoms are similar to those in the group,
--PPPD
https://connect.mayoclinic.org/discussion/vertigo-287879/?pg=5#comment-1065355
This is a rare disorder that causes vertigo and visual problems. It might be difficult to find a doctor who can diagnose and treat it. If you see a neuro-ophthalmologist, they might be able to help you.
As this problem involves balance, consider asking for a referral for vestibular therapy. It can be very helpful for balance/vertigo problems. Have you had vestibular therapy yet?

I don't recall exactly where you have been seen for this problem, but have you considered a consultation at a multi-disciplinary health care facility like Mayo Clinic (link to appointment information http://mayocl.in/1mtmR63) or a university medical school?

I urge you to not get discouraged and to keep seeking answers. Some disorders are not easy to diagnose or treat.
Will you keep in touch and let me know how you are doing with this process?

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