Mayo Clinic ... I'm Suppose To Go What Can I Expect

[pinkbubbles1680]

Hello I'm new to DINET

I'm 18 I was diagnosed with pots in 2008 after being hospitalized for malnourishment due to gastroparesis

Since then I've been dealing with a lot of icky gastro issues. I've been on ng feeding tubes and had to drastically change my diet

-very slow motility

-bloating

-nausea

-vomiting

My stomach has been improving and I can manage my diet okay now with out a feeding tube

I was put on a florinef in 2008 and I didn't really have to many pots issues besides the stomach motility problems and really bad fatigue.

About a three months ago I started having awful pots issues: palpatations, extreme fatigue, panic episodes, dizziness, flu-like symptoms

I could barely function... tried midodrine but it made my bp skyrocket and I was rushed to the e.r.

Doctors decided to up my dose of florinef from .1 to .2 mg.

Since then I've been improving but I'm still doing pretty crappy

My neuro and gastro docs. want to send me to mayo clinic to be evaluated

I feel like I've had every test under the sun and tried almost every medication I've had really great medical care and I'm just not really sure what more they can do at mayo clinic

I was wondering who has been there and if it helped.

I would love to hear peoples experiences

Thanks so much,

Alex

Testing I've had:

24 hour urine test

24 hour EEG

EKG

zillions of blood tests : cbc's, vitamin levels, cortisol, thyroid all normal

gastric emptying study : showed significant gastroparesis

brain mri's and spectroscopy

antroduodenal manometry : neurogenic intestinal dismobility

tilt-table test : POTS and NMH

colonoscopy

upper endoscopy

ct scan of abdomen

barium contrast studies

probably a million others that I have forgotten

[Kitsakatsa]

Hi. My story is similar to yours except I am a zillion years older.

I was admitted for the same thing and the same way. Nausea is my primary symptom and I can't think of anything that could be worse.

Are you going to Mayo Arizona, or Mayo Rochester? I have been to both.

Mayo Arizona, it is open invitation. You basically go there and are seen by an intake Dr. who sets you up with specialists. They didn't seem to know much about POTS. I didn't come away with anything that helped.

Mayo Rochester is by invitation and they will have you set up for appts ahead of time (they will ask you to mail your med recs). When you get your schedule, the visits can span over a week or more. They have patient advocates at each of the specialty areas and they can help you try and get your appts moved in closer. Sometimes you have to sit by their desk and wait for cancellations. Its worth it though if you are on a budget.

They will re-run nearly every test. Redo the tilt table etc. There is an additional test called the "purple test" they will likely run. They dust your naked body with gold dust (you will look like an oscar!) and then put you in a covered tube thing. They increase the temperature in the tube to over 100 degrees and a camera inside the tube takes a computer image (not detailed enough to show you naked) of the gold dust. As you sweat, the dust will turn to purple. They measure the heat with the coverage of purple on your body and that determines your nerve damage. I eventually turned purple, but was shivering like crazy immediately. My feet remained totally gold. It was Awesome! That test will wipe you out. You will need TLC and some rest afterwards.

Between the tests, the appts and waiting to move up your appts, there is not much time in the hotel. Definately take something to do like books, etc. A few years ago, there was a Barnes and Noble a short walk away. That helps alot.

I did not come away with much- the star medication at the time was Mestinon. It didn't work on me. What did work was to increase my Florinef to .4 and add Clonidine. I have heard that Mestinon works for lots of people though. Mayo has done new research since then and I would not doubt if they had something to help you. The GI department didn't have much to offer, but that morning everyone was off their game because one of the docs was in a fatal car accident on the way to work that morning and they were very shaken.

Well, I've been rambling enough. Mayo is a wonderful place. I am greatful to have gone.

Let me know if I can tell you anything else.

Kits

[potsgirl]

I've also been to Mayo (Rochester - where the autonomic specialists are now) about a year ago. It was a great experience to have all of the doctors working together in one system.

I don't think I can add much more to what Kitsakatsa wrote, but I do think it's worth it to stay in one of the hotels that connect by underground tunnels to the main Mayo Clinic building. You can get a suite with a kitchenette, and a separate bedroom, which is wonderful when you need to nap, and you can save money getting your own groceries at a nearby grocery store. The cafeteria in the Mayo building is also pretty decent.

When are you going?

[pinkbubbles1680]

Well I was referred to the mayo clinic in Minnesota but they just called me yesterday and said that I got rejected by the doctor so I guess they wont see me at that particular mayo clinic. I'm not really sure what I'm going to do now my mom is looking for other POTS clinics around the country. Thanks for your replies

~alex

[potsgirl]

Look on the home page of this site. It lists good doctors and clinics. The Cleveland Clinic and Vanderbilt are two other excellent places to go.

[Brye]

Wow ... do they give a reason why they reject you? Is there a certain criteria needed?

Brye

[pinkbubbles1680]

Well I guess I called the wrong clinic at Mayo the lady on the phone told me to phone neurology and I guess it was adult neurology and I'm still rather young. I didn't know that there was an actual POTS clinic I was suppose to call so I find out next week if they will accept me.