Progressive supranuclear palsy

Posted by pattywelch @pattywelch, Sep 13, 2018

I have just been told about this as a possible diagnosis instead of Parkinson’s Disease. Can anyone give me any information regarding this diagnosis? I have red the articles, but nothing is very helpful on what I can expect.

@pattywelch

sory he is sending me to a neuro-ophthalmologist. my appt is Thursday @ 1pm

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@pattywelch
It would be nice to hear from you after your appointment, Patty. Will you post an update?

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In reply to @pattywelch "yes I will" + (show)
@pattywelch

yes I will

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i saw the neuro-ophthamologist today and she said that she doesn't know if I do have PSP or not but the only suggestion she has for me is to tape over the left lens when I read. i am still waiting to hear about the appt. I will update you when i get it.

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@pattywelch

i saw the neuro-ophthamologist today and she said that she doesn't know if I do have PSP or not but the only suggestion she has for me is to tape over the left lens when I read. i am still waiting to hear about the appt. I will update you when i get it.

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Hello @pattywelch

I appreciate your update after your eye appointment. I suppose that covering the left lense will help to eliminate the double vision? Will you let me know how that works out and if it helps you?

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i am still waiting to hear from the Mayo Clinic as to when my appt is should i continue waiting or should i call – and if so whom should i call?

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@pattywelch

i am still waiting to hear from the Mayo Clinic as to when my appt is should i continue waiting or should i call – and if so whom should i call?

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covering the eye is very effective for reading for an extended period of time.

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@pattywelch

i am still waiting to hear from the Mayo Clinic as to when my appt is should i continue waiting or should i call – and if so whom should i call?

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Hi, @pattywelch – glad to hear that covering the eye is helping with reading. As to your appointment, if you've not had any communication yet from Mayo Clinic and you are being referred by your doctor, I'd suggest following up with your doctor's office (to ensure the referral went through, and so they can track it down for you).

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@lisalucier

Hi, @pattywelch – glad to hear that covering the eye is helping with reading. As to your appointment, if you've not had any communication yet from Mayo Clinic and you are being referred by your doctor, I'd suggest following up with your doctor's office (to ensure the referral went through, and so they can track it down for you).

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I did that and they said they sent everything to the clinic and will hear from them.

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well i finally got in touch with the Neuro. dept at the Mayo and I was told they don't have any open appts. They have more patients than appt available.
i asked her what i was suppose to do? she said to contact my Neurologist, So I am waiting to see him. i have an appt on 11/1. i was very disappointed and hurt by this response.

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@pattywelch

well i finally got in touch with the Neuro. dept at the Mayo and I was told they don't have any open appts. They have more patients than appt available.
i asked her what i was suppose to do? she said to contact my Neurologist, So I am waiting to see him. i have an appt on 11/1. i was very disappointed and hurt by this response.

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Hi, @pattywelch – It must be so disappointing and frustrating to not get an appointment at Mayo Clinic. Unfortunately, because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors. Mayo would not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving.

Nonetheless, it is hurtful to get such a response. I get that.

Another option would be to go to a facility in the Mayo Clinic Care Network, https://www.mayoclinic.org/about-mayo-clinic/care-network/members.

I am reassured, though, that you have an appointment with your neurologist tomorrow already. Did he or she wish to refer you elsewhere because s/he doesn't have experience in PSP or because you requested a second opinion?

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@lisalucier

Hi, @pattywelch – It must be so disappointing and frustrating to not get an appointment at Mayo Clinic. Unfortunately, because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors. Mayo would not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving.

Nonetheless, it is hurtful to get such a response. I get that.

Another option would be to go to a facility in the Mayo Clinic Care Network, https://www.mayoclinic.org/about-mayo-clinic/care-network/members.

I am reassured, though, that you have an appointment with your neurologist tomorrow already. Did he or she wish to refer you elsewhere because s/he doesn't have experience in PSP or because you requested a second opinion?

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i wanted a definitive diagnosis. the PET scan isn't done here for PSP. i just want to know what i have and then i can deal with it after. it is very difficult to deal with something if you don't know what it is. i'll see what my neurologist says today and let you know.

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@pattywelch

i wanted a definitive diagnosis. the PET scan isn't done here for PSP. i just want to know what i have and then i can deal with it after. it is very difficult to deal with something if you don't know what it is. i'll see what my neurologist says today and let you know.

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Hi, @pattywelch – wanted to check in with you and see what your neurologist had to say at your 11/1 appointment?

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