Billye,

Glad you are still posting. Hope you are not getting too tired and stressed.

see my post on Alan's experience with the massage chair. I just posted it on my thread titled Mitral Valve Prolapse. It will make you smile!!!

If this doesn't make at least one of you (who has the bucks), go out and buy this chair, well, I don't know.

Alan is still smiling. I think he's going back tomorrow for another demonstation.

Melody

--Billye will be ready for that massage chair. Though I hope it wouldn't rattle her around too much.

My thoughts are with you, Billye--let's hope something shakes out of all this. (Something that can be treated. Effectively.)

You guys are great!! Today was a short day, not a fun one but short. Had the Anorectal Manometry Procedure today. Also blood tests for the third time. Seems I'm in the Rare Disease Category and there is a lot of research going on in this field. Mayo has enough of my blood, biopsies to build an entire person. Hope it helps someone. I've voluntarily donated blood and the biopsy tissues to the research studies. I hope it will contribute to the help in the future for Sjogrens and the autoimmune diseases.

What I've learned in this trip so far is that there is no cure and no real treatment for Sjogrens and the issues that come from it.

Also, there is nothing else that will help my eyes and my vision.

But..I still have tests to go and another trip to the neuro. Also a trip to the GI doctor after she finishes her tests. It looks as if my pelvic floor may have collapsed and is blocking or affecting the bowel. But there are more tests to come, so we will see...

Have the weekend to recover then start again. Three days has turned into a week and a half. But they are being very thorough.

I had the honor of seeing Dr. P.J. Dyck (head of Mayo's neurological dept)yesterday along with his assist. Dr. Michelle Mauermann. He was a very charming older man who made me feel at home right away. Dr. Mauermann is young and so friendly. One of the doctors in the neurological dept asked me what I thought of her. I responded. He said "She's one smart young lady." So I think I am having excellent care.

Mayo is amazing. After being treated here, it will be hard to go back to the dysfunctional medical care of our region. Everything just clicks into place here. Totally awesome..It's all run by a computer system and appointments are just just fitted into the schedule with such ease and speed. Must stop..totally sat out.

Thanks to all of you,
Billye

Billye: I am so happy they are treating you with kindness and compassion.

And it doesn't hurt that they are top notch doctors, now does it???

Feel good....

Melody

Good to hear from you - you sound like you have some energy - or maybe its relief - you've gotten thru a week!!! Yea! Now you get to "chill" for a coupe of days - eat chocolate and watch silly movies!

Are they getting the results on the biopsies etc back to you quickly - will you have a summary appt. at the end of all the tests? Or will they contact you at home with final results on everything? (I know some of those biopsies usually take a long time)

Anyway, you sound good - hang in there - and get some rest! (oh - I had that test you got to have today several years ago - real fun huh...)

Take Care!!!!!!!!!!

Billye:

I just looked up the definition of Anorectal Manometry Procedure.

Wanna know what I think??

I think Donald Trump should go out and buy you the massage chair that Alan sat on. It's only right!!!!

More hugs and fuzzies
Melody

Billye,

I am extremely interested in your trip to Mayo and am eager to hear every detail you wish to share about your experience.

I have been seeing specialists (like many people on this site) after specialist for about 3-4 years now. I am diagnosed with one thing after another, but my decline has been rapid in this past year.

My disease-of-the-year is a pseudo tumor behind my left eye. I began seeing a Neuro Ophthalmologist about 4 hrs from home and she started me on prednisone 65 mg to see if the inflammation and symptoms would subside.

After three visits in 2 mths, there was no change in the ptosis of that eye, nor the pressures and inflammations. She stated that in all of her years she had not seen a case like mine (and I am sure many of you have heard that one too).

She suspects a possible pituitary tumor or maybe Cushing's and referred me to Mayo in Minn. So I will be going there in January to see a Endocrinologist and a Neuro Ophthalmologist.

My entire endocrine system has either been removed or compromised and the only one that hasn't been checked is the pituitary.

So, I would love to hear the good/bad about your experience. I hear it is huge and that you spend your days trying to find where you are supposed to be, and I don't mean that in the negative sense, just that it is only honking big place.

I was told that you will get an itinerary which will guide you to each appt, test or blood work. Mine is in the mail. lol

I have heard nothing but positive things about Mayo and am counting on them to look at the big picture for me. In my case, if they find an adrenal or pituitary tumor and it can be removed they will add me on to the surgery schedule and do it while I am there. This is what I am praying for.

Funny how we almost welcome a diagnosis (good or bad) when we have been searching for answers for so long. I don't care what they tell me............just tell me SOMETHING. I am starting to feel like a side show, especially when I have been called a medical nightmare by a specialist.

So, you drive safely, count the stars and let us know how many there are, return safe and sound and with a definitive answer and solution.

I will say a prayer for you and yours. Maybe Mayo is the answer for both of us. Here's hoping!!!!!!!!!!!!

My sincere best wishes and good luck,
Judy

knew you were special, but, being in the 'really rare disease' category I'd not ever thought of!
Just think! 'bits' of you will be kept for HISTORY? Or, is it posterity? [NOT POSTERIOR!]
That they wanted to do more tests was, super, but all this means SUPER-DUPER as you KNOW they will do follow-ups big time w/your regular docs at home. Believe me, that old 'super-peer pressure' thing will be working big time!
I just want them to do/give/have something that gives you some sort of RELIEF! Like a rabbit out of a hat...
Just keep those 'seen it all [NOT YET]' folks on their toes....at least they can BE on their toes.

Super soft special HUGS dear Lady! - j

You are one brave lady..Billye. And now RARE can be added on.

This is really interesting to read. That you share it all with us must take
alot of energy for you.

I have a joke I tell people about getting older..
I tell them I feel like an old clunker driving down the road, with my muffler
falling off, my right rear tail-light out, squeaking brakes, cracked windshield, and a broken side view mirror, hanging by a thread. Now I think adding a rusted out floor (the collapsed pelvic floor) would be a goody to consider!

Perhaps now, a procedure could be offered to correct the collapse? That would remove alot of pain for you. This seems hopeful.

Billye:

Mrs. D. compares our bodies to an old clucker rolling down the street.

My spark plugs fell out yesterday.

love ya,

Melody