Noob

[StephL]

Hi Everyone, Its nice to meet you all. I've been following the forum for a couple of months now but didn't want to join until I had more solid answers. Without the tests to back them up, I'm on the road.

I'll try to make my story as short as possible, as I know many of you have walked this road already.

I guess I've had weird issues that doctors couldn't figure out my whole life so possibly I've always had dysautonomia. A few years ago my daughter noticed two different sized pupils. At first I laughed it off but after a bit of research I realized I better get into a doc asap. After months of every brain scan and image they could take of my upper body, they decided nothing was wrong with me. I was having several other symptoms during this time but as usual the docs didn't seem concerned about any of them.

Then last summer I noticed that my BMs weren't my usual strange pattern and after a couple of months of that I went to my PC. I thought for sure it was my gall bladder as I have all the symptoms. I went through the usual wringer of tests with no results. Since that time my anisocoria is back, I've lost 30 pounds in a 3 months time, I've had intense intestinal pain, I live with near constant nausea, my pulse stays in the 40s most of the time, sometimes I pee every 10 minutes for a couple of hours. Among other things.

I had given up on finding the answers a few years ago when my eyes went wonky, this time I was determined not to give up until I had the answers. If the doctors couldn't find them, I would, and I did. Months of research lead me here. I thought hemochromotosis for awhile and then Addison's disease but the tests all came back fine for them.

I knew after all my research that the answers had to lay within my ANS. I made an appointment with Dr. Randy (Thompson) in Pensacola and he is certain I have dysautonomia. He said that he is so sure that if I failed a TTT that he would run a second one. He said its really the only thing that makes sense give all my symptoms.

After years of dead ends, of being treated like a hypochondriac, I finally have answers. Well, not officially really. I go on the 8th for the TTT. I decided to go up to P'cola for the test because I know they do it the way Dr. Randy wants it done. The cardiologist I saw locally was not very helpful and I don't want to go back to his office for tests unless I have to.

That is the basics. I'm sure I'll have a ton of questions and I have input on so many threads I've read through. I look forward to getting to know you all and I'm so grateful to have people who knows what its like to walk in my shoes.

[hholmes13]

Sorry you have to be here but welcome!! The people here are awesome for both support and information. Good luck with your tests and finding a correct diagnosis!

[sue1234]

Welcome, and we are glad to have another person with some input! We can NEVER have too many brains thinking on all this.

[LindaJoy]

Hi, Steph. Welcome to the group. You could not have found a better place to come for support, answers and friendship. I've been here since 2005 and could not do without the people here.

I'm sorry you have suffered so much, but I'm glad to hear that you have found a doctor who believes in you (that is sooooo important) and is wanting to do testing to finally get some answers.

You hang in there, ask away (there is almost always someone here with an answer), and again, welcome. This group has been a life saver for me. I hope it can be of help to you, as well.

Lindajoy

[Katybug]

Welcome! Sorry we meet under these circumstances.