Jasione

Thank you, everyone, for your love and well wishes and prayers this past week. I am home and really enjoyed sleeping in my own bed for the second time in fourteen days! I am exhausted as you can imagine.

So, here's what I learned. Autonimic dysfunction was confirmed. My stomach is not functioning correctly. The top part seems to move the food down, but the lower part doesn't do it's work at grinding and empyting and doesn't do enough to stimulate the small bowel to do it's job. The nausea and the pain are all tied up in the neurotransmitters sending pain and nausea messages to the brain, even when there's nothing to be nauseated about. Basically, the same problem that causes the POTS and other autonomic dysfunction symptoms.

Unfortuneately, there's not a lot to do about it. They gave me a perscription for one more nausea med that is a 3 day patch. I'll try that on my worst days hoping it will allow me to stay hydrated and out of the hospital. I am supposed to stay away from pain meds. This is discouraging to me because there are times that the pain is so bad. And the one thing I have had is my pain meds to have a few hours of comfort. They are going to send me to a pain clinic to learn to deal with the chronic pain without meds as much as I can. One thing the doctor suggested was using Valium on my very worst days. He said it doesn't help the pain, but it will help me deal with and it won't slow down my motility as much as the Vicadin. I'll have to talk to my family doctor about that this week. The last and most hopeful thing is a medication he's prescribed for the motlity. I have to order it from Canada, but it doesn't have the same side effects as Reglan and he says, works as well as Reglan for motility. To begin with this week, I am going to give Zelnorm a try. I am doubtful though, because I have frequent boughts of diarrhea and I'm afraid Zelnorm will enhance that. But he thought it was worth a try so while I work on getting the med from Canada, I'll try it.

The only other thing I can do is try to get the autonmic dysfunction under control. I didn't get to see any of the autonomic subspecialists while I was there. Most of them were gone. I do have an appointment with Dr. Sandoni in December. I won't travel again in December, but at least I have an in now and I have the option of seeing them in the spring. I see Dr. Grubb for the first time in January, so I may not even feel the need to go back to Mayo... we'll see.

The autonomic testing at Mayo is so professional! Some of my other tests were so uncomfortable, that the autonomic testing seemed almost fun in comparision. They told me they usually run the tests on about 12 people per day, but they can do 15 a day if needed. As I said in my other note, they only make you stand on the tilt for 10 minutes so it wasn't near as bad as the other two tilts I've had.

Mayo is an amazing place! Almost all of my appointments were on time and I actually had very little waiting room time. We stayed at the Khaler Grand and it was perfect! The temps were down to -9 with wind chill, but we never even stepped outside in it. Plenty of food choices, wireless internet available in waiting rooms ( my husband did lots of waiting for me.

Well, just wanted to give you all the final update. If anyone has questions, feel free to ask and I'll try to answer!

Hope eveyone has a wonderful Thanksgiving week.

Love Roselover

Hi folks:

Erythromcyn can also cause chemical hepatitius. It hospitilazed me for hepatitus back in 1993. So be aware of that...if you are taking it and start getting worse, weaker, or you develop upper right quadrant pain then let your doctor know.

Was great to read Roselover's posting on Mayo as I head there in three weeks myself for testing. I was there in '96 and '97 and my ability to eat has gotten much worse and my bone density loss is now out of control. 12 years of dysautonomia and gastroapresis are pretty hard on bone density.

So this is my last hope at finding some way to stop the bone loss.....best, Jasione