Parkinsonism

Posted by mvanstem @mvanstem, Feb 6, 2024

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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Profile picture for mvanstem @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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Profile picture for mvanstem @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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Hi @mvanstem, I have the same as a result of PCNS Lymphoma. Balance, double vision, nystagmus and worst of all Oscillopsia. Have you tried any medications that have reduced the Oscillopsia? I am trilling a fourth drug at the moment but no luck.

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Profile picture for pfother @pfother

Hi @mvanstem, I have the same as a result of PCNS Lymphoma. Balance, double vision, nystagmus and worst of all Oscillopsia. Have you tried any medications that have reduced the Oscillopsia? I am trilling a fourth drug at the moment but no luck.

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Hello @pfother

Welcome to Mayo Connect. It looks like you have been treated for this condition for a while now. I would encourage you to post in the Parkinson's support group. In that support group, there are a few discussions which you might find helpful. Here are the links:

--Anyone have both Parkinsonism and Myasthenia Gravis
https://connect.mayoclinic.org/discussion/does-anyone-have-both-parkinsonism-and-myasthenia-gravis/
--Parkinson's or Parkinsonism
https://connect.mayoclinic.org/discussion/parkinsons-or-parkinsonism/
If you are comfortable sharing more, how long ago did these symptoms begin? Have treatments, other than medication, been tried? I'm thinking of vestibular therapy, etc.?

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Profile picture for pfother @pfother

Hi @mvanstem, I have the same as a result of PCNS Lymphoma. Balance, double vision, nystagmus and worst of all Oscillopsia. Have you tried any medications that have reduced the Oscillopsia? I am trilling a fourth drug at the moment but no luck.

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My neuro opthalmogist has prescribed Gabapentin. It helps to a degree but it’s not a miracle drug

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I hope to be traveling from El Paso, TX to Mayo Clinic in Arizona in November. I may be traveling by self and will likely have room for two more if you and wife get an appointment around the same time.

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Profile picture for louiem777 @louiem777

Thank you. I will definitely keep in touch.

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I meant a previous message to you. I will be heading from El Paso, TX to Mayo Clinic in Arizona in November. I will have room for two persons if you get an appointment towards mid-November.

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Profile picture for mvanstem @mvanstem

My neuro opthalmogist has prescribed Gabapentin. It helps to a degree but it’s not a miracle drug

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Hi @mvanstem

I am glad to hear that Gabapentin has helped to a degree. Which symptoms are most relieved when you take Gabapentin?

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Profile picture for acutis @acutis

I meant a previous message to you. I will be heading from El Paso, TX to Mayo Clinic in Arizona in November. I will have room for two persons if you get an appointment towards mid-November.

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Hello @acutis and welcome to Mayo Connect.

I see that you will be going to Mayo Clinic in Arizona next month. As you are comfortable doing so, please share what you are hoping to accomplish during your visit there. Are you looking to confirm a diagnosis or to get help with a treatment plan?

As this is your first post in the PD support group, please share about your journey with PD. I look forward to hearing from you again.

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