Share this:
pattywelch
@pattywelch

Posts: 20
Joined: Mar 16, 2018

progresive supranuclear palsy

Posted by @pattywelch, Thu, Sep 13 4:45am

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.

REPLY

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?

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.

@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.

My doctor is doing a referral to the Mayo Clinic.

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?

@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.

@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..

@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.

@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.

@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?

@hopeful33250

@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?

Jump to this post

not that I am aware of. I am waiting to hear from his office/ he believes the double vison is from the PSP.

@pattywelch

not that I am aware of. I am waiting to hear from his office/ he believes the double vison is from the PSP.

Jump to this post

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

@pattywelch

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

Jump to this post

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

yes I will

@pattywelch

yes I will

Jump to this post

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.

Please login or register to post a reply.