Going to Mayo

[Sunshine]

Saw neuro and he said good idea to go to university for an opinion due to the complexity of my case. I got an appointment at Mayo in Jacksonville early April.

That’s for the consult. There will be tests of course.

[stillstANNding]

This sounds like a good move. I hope they have some more treatment options for you, Sunshine.

ANN

[Ikoiko]

I am a big fan of academic medicine. They are a lot more aggressive about diagnosis and treatment.

[Sunshine]

The Mayo expert on Stiff Person Syndrome is in Rochester Minnesota. I can’t fly there with theses problems. So, they scheduled me with a neuro who specializes in movement disorders and Parkinson’s. I figure he has the doc in Minnesota he can talk to if necessary.

[agate]

They could teleconference, seems to me. You're probably a very interesting case. Not that that's any comfort to you but they ought to be interested in a combination of MS and SPS.

Such a person doesn't come along every day.

[stillstANNding]

Good point, Agate.

ANN

[Virginia]

I am glad to hear this Sunshine. Very good idea.

[Pegakafarmgirl]

Sunshine you will get a elite team to help you with this,,,glad you finally will get some answers

Mayo Clinic in Minnesota, is a great hospital,, been there a few times

[Earth Mother 2 Angels]

((((((Sunshine)))))) ~

So very glad for you that you have this referral. I suspect you will receive extra attention, and you will be the subject of study, because of the rarity of SPS, and likely the rarity of the combo of SPS and MS. While helping you, they will learn from you, which will help others. I'll be very interested in the opinions of Mayo experts on MMJ and its efficacy in treating your spasms.

I know that they will be awed by you, and you will teach them. I will pray that they have answers to help you.

Looking forward to hearing about your Mayo experiences.

Love & Light,



Rose

[Howie]

The good news is you're going to go to Mayo, but the bad news, you have to wait a month. But you can do it! Another day is slipping away as I type. Hang in there.

[Sunshine]

Actually, I needed the month to coordinate gathering records, MRIs, CT scans, husband’s work schedule. Could’ve been seen next week otherwise. The disease seems stable, so I took appt coinciding with DH day’s off. It is April 2.

And gotta rearrange IVIG infusion day too.

[Sunshine]

They could teleconference, seems to me. You're probably a very interesting case. Not that that's any comfort to you but they ought to be interested in a combination of MS and SPS.

Such a person doesn't come along every day.

For all I know, they will take away both dx and come up with a different dx!

And don’t forget Common Variable Immune Deficiency, another rare disorder.

[Catdancer]

Sounds like a good idea. Whenever things get complicated, a visit with specialists is good. Especially some place like Mayo, where a team of doctors looks at you, not just one. I suspect they can telecommunicate : When my husband was going through medical issues, that's what happened with him -- the doctor wanted him to go to Mayo--so did a teleconference, and since then she's been in touch with them by phone to coordinate treatment (He doesn't have MS; he does have a rare form of leukemia..)

[Sunshine]

They were so helpful to me when I had that problem with the recalled Avonex. It’s a terrific place. So patient centered too, every worker is pleasant. I am glad you had good experience too. Wish I could go to Minnesota, but this will be good too.

When I went there for another reason a few years ago, I went surfing Jax beach. That was a fun wave :) . Not this time. I need a team of surfers to do that now. And the beach is so wide, too wide to walk.

If I use my iPad, I will try to post from there.

[Lazarus]

They were so helpful to me when I had that problem with the recalled Avonex. It’s a terrific place. So patient centered too, every worker is pleasant. I am glad you had good experience too. Wish I could go to Minnesota, but this will be good too.

When I went there for another reason a few years ago, I went surfing Jax beach. That was a fun wave :) . Not this time. I need a team of surfers to do that now. And the beach is so wide, too wide to walk.

If I use my iPad, I will try to post from there.

Good luck to you. This is a great move. We will all be right there with you!