Mayo Clinic update.....not really

[timer lady]

as I have not been given an appointment.

The triage doctors appear to agree with the diagnosis of Susac's Sydrome however they feel that there are no further tests or treatments that can be done at Mayo that couldn't be done here.

In a way, I'm relieved not to have to travel for treatment. I'm pretty sure that my neuro doctor will follow through with the treatment guidelines for this syndrome - if not, it's time to find a new neuro doctor.

Feeling a tad frustrated this morning - have a diagnosis; now need someone to treat it.

A good friend of mine is going to help me through this mess as I have a few cognitive/memory issues. Help me with research, review of letters I've written, etc.

Some days I feel like such a child - I can't for the life of me remember how to do something or how to get from one place to the next. It's a tad frightening. Other days I feel like my old self except for the weakness & the balance issues.

Okay, I believe I'm done whining for the day - thanks for listening.

 

[busywend]

I am sorry for your frustration, Linda.

But, it is a good think to not have to worry about traveling for treatment. I just wish they would get going already!

:angel:

 

[slsh]

Sweetie - one foot in front of the other. I know you're going to come out the other side ready for the golf course and ...

The Spa Trip! :smile: :bath: : :shopping: :treadmill: :bath: :smile:

Mayo doesn't know what they're missing. :wink: Hang in there!

 

[Just keep swimming]

Linda,

Sorry there isn't a magical yummy tasting syrup that could take it all away, like NOW!! I hate illness!! Especially ones that have no clear cut answer or "cure date".

Please know that I am thinking of you and praying that things will start getting better for you!

Gentle cyber hugs,
Vickie

 

[Hound dog]

Linda

I think it's going to be a plus you're not going to have to travel to Mayo for treatment. But like someone else said I wish they'd push forward with it already. I know this has got to be so frustrating for you.

Keeping you in my prayers.

Hugs

 

[flutterbee]

Linda, sending you all the good juju I have.

It is so frustrating. One day at a time....

 

[Star*]

https://web.archive.org/web/20070207145219/http://www.neurohaven.com/susac1.htm

OKAY -so now we have a diagnosis, and we have up to 5 years for this thing to disappear!??

In the mean time we're going to wrap you in hugs and prayers -

Um....I need a favor - can' you play the piano at the ranch for the board party? I ordered it for you - Yamaha grand, ebony. I had a Bosendorfer on order but something to do with shortage of Black Forest trees and such -we took delivery of the yamaha today!

 

[Shari]

Many hugs, Linda.

 

[mrscatinthehat]

Hugs...sorry it is an uphill battle.

Beth

 

[Penta]

I am glad to hear you have a good friend to help you sort out your paperwork and such. You need as many support systems for yourself as you can find.

Would your budget allow for a food service that makes prepared meals for a week and delivers them...so you could take them out of the freezer every night. They would be homemade, just made by someone else.

My wish for you is that you can spend your recovery time engaging in activities that nourish you...your painting, observing nature, long soaks in the tub, listening to music, and maybe a massage day once in awhile. And let someone else get all the home chores done.

 

[timer lady]

Thank you all - I've essentially spent the last 2 days sleeping. husband forced the issue. Not that I was waited on hand & foot. Mustn't spoil Mom too much - she might get used to it. :bath:

Star - I would be honored to play at your party; give me directions to the shindig & I'll be there!

 

[Wiped Out]

Linda,
Sorry I missed this. Maybe we all need to do a speed up the healing dance :dance:. Seriously, I do pray day daily for your quick healing.