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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.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Sep 13, 2018

Hi, @pattywelch. That is very interesting that your doctor is now thinking you may have progressive supranuclear palsy instead of Parkinson's.

Here is some Mayo Clinic information on this palsy, in case you've not run across this one yet: https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/symptoms-causes/syc-20355659

I realize this is uncommon, but a couple of Connect members like @afoster80 and @jhinken have mentioned this condition, and I'm hoping they will return and join in the discussion and offer some input on what you can expect. @hopeful33250 may also have some thoughts.

What do you think made your doctor look into other potential diagnoses, @pattywelch?

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 13, 2018

Hello @pattywelch

As Lisa, @lisalucier, said it is interesting that your doctor is changing your diagnosis from Parkinson's to supranuclear palsy. Had you been taking Parkinson's' meds (like Sinemet or others)? If so, were the meds helpful?

When you originally posted in March you mentioned that you had no tremors but you did have a lot of stiffness. At that time I posted about physical therapy and a regular exercise program being helpful for PD symptoms. Were you able to get involved with programs like that?

Currently, what is your most difficult symptom?

I look forward to hearing from you again and getting to know you a little better.

REPLY
1 reply
pattywelch | @pattywelch | Sep 15, 2018
In reply to @lisalucier "Hi, @pattywelch. That is very interesting that your doctor is now thinking you may have progressive..." + (show)
@lisalucier

Hi, @pattywelch. That is very interesting that your doctor is now thinking you may have progressive supranuclear palsy instead of Parkinson's.

Here is some Mayo Clinic information on this palsy, in case you've not run across this one yet: https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/symptoms-causes/syc-20355659

I realize this is uncommon, but a couple of Connect members like @afoster80 and @jhinken have mentioned this condition, and I'm hoping they will return and join in the discussion and offer some input on what you can expect. @hopeful33250 may also have some thoughts.

What do you think made your doctor look into other potential diagnoses, @pattywelch?

Jump to this post

my symptoms have been classic for PSP.

REPLY
pattywelch | @pattywelch | Sep 15, 2018

My doctor is doing a referral to the Mayo Clinic.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 15, 2018

Hello @pattywelch

I am glad to hear that you will be referred to Mayo Clinic.

Were the Parkinson's meds at all helpful to you? What would you say is the most difficult symptom that you have now? Do you have any other concerns that you would like to share?

REPLY
2 replies
pattywelch | @pattywelch | Sep 16, 2018
In reply to @lisalucier "Hi, @pattywelch. That is very interesting that your doctor is now thinking you may have progressive..." + (show)
@lisalucier

Hi, @pattywelch. That is very interesting that your doctor is now thinking you may have progressive supranuclear palsy instead of Parkinson's.

Here is some Mayo Clinic information on this palsy, in case you've not run across this one yet: https://www.mayoclinic.org/diseases-conditions/progressive-supranuclear-palsy/symptoms-causes/syc-20355659

I realize this is uncommon, but a couple of Connect members like @afoster80 and @jhinken have mentioned this condition, and I'm hoping they will return and join in the discussion and offer some input on what you can expect. @hopeful33250 may also have some thoughts.

What do you think made your doctor look into other potential diagnoses, @pattywelch?

Jump to this post

He has only been my doctor for about one year or s little less and he was going by my symptoms.

REPLY
pattywelch | @pattywelch | Sep 16, 2018
In reply to @hopeful33250 "Hello @pattywelch As Lisa, @lisalucier, said it is interesting that your doctor is changing your diagnosis..." + (show)
@hopeful33250

Hello @pattywelch

As Lisa, @lisalucier, said it is interesting that your doctor is changing your diagnosis from Parkinson's to supranuclear palsy. Had you been taking Parkinson's' meds (like Sinemet or others)? If so, were the meds helpful?

When you originally posted in March you mentioned that you had no tremors but you did have a lot of stiffness. At that time I posted about physical therapy and a regular exercise program being helpful for PD symptoms. Were you able to get involved with programs like that?

Currently, what is your most difficult symptom?

I look forward to hearing from you again and getting to know you a little better.

Jump to this post

My most difficult symptom at this point is the double vision..

REPLY
pattywelch | @pattywelch | Sep 16, 2018
In reply to @hopeful33250 "Hello @pattywelch I am glad to hear that you will be referred to Mayo Clinic. Were..." + (show)
@hopeful33250

Hello @pattywelch

I am glad to hear that you will be referred to Mayo Clinic.

Were the Parkinson's meds at all helpful to you? What would you say is the most difficult symptom that you have now? Do you have any other concerns that you would like to share?

Jump to this post

The Sinemet is somewhat helpful. I am not sure about the tequila yet. The doctor is considering stopping it.

REPLY
pattywelch | @pattywelch | Sep 16, 2018
In reply to @hopeful33250 "Hello @pattywelch I am glad to hear that you will be referred to Mayo Clinic. Were..." + (show)
@hopeful33250

Hello @pattywelch

I am glad to hear that you will be referred to Mayo Clinic.

Were the Parkinson's meds at all helpful to you? What would you say is the most difficult symptom that you have now? Do you have any other concerns that you would like to share?

Jump to this post

Yes they have helped somewhat.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 16, 2018
In reply to @pattywelch "Yes they have helped somewhat." + (show)
@pattywelch

Yes they have helped somewhat.

Jump to this post

@pattywelch
Does your eye doctor have any opinion on the double vision?
I would be interested in hearing how your appointment goes at Mayo.
Has an appointment date been scheduled yet?

REPLY
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