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About StephL

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  1. I have anisocoria as well. I've had docs tell it wasn't related but how can it not be. I've got hippus too, it's weird.
  2. I haven't found anything yet that helps mine and I currently weigh 99 pounds. However, I met with a new doctor this week and he treats GP. Plus one of the doctors in his group is conducting a study on it. There are several clinical trials out there for the condition and they are worth looking into if things are bad enough. There is one out of IN that I would really like to do but they don't pay for anything and I can't afford to fly out and my insurance won't cover the surgery.
  3. Hi again everyone. I know I'm not around much but I really value the knowledge here and I need a little advice on my daughter. I am the one in the family who has been officially diagnosed with some form of dysautonomia. My grandma, my uncle, and my daughter have all had numerous fainting episodes though, with other unexplained problems. My daughter called this morning to let me know that she fainted again last night. Her faints are always accompanied with severe headaches. The first time, I knew it happened we took her to the doctor and he ordered an MRI which of course came back fine. Anyway,
  4. I've been nauseous for over a year now. I've lost over 50 pounds and almost all of it was in less than 6 months. I could stand to lose the weight but I'm starting to get too thin now. I'm sorry you live with it too. I guess the standard problem is that treatment can be different for so many of us.
  5. It's called anisocoria. It's almost certain that it's fine and just part of this condition. Pupil control falls under the ANS. I tell everyone when they first notice it though, to get their noggin' scanned just to make sure because it can be a sign of something more serious. Most likely it will be a waste of your time but it's better than not knowing. I have it in low light. I also have hippus. My pupil will pulse quickly when trying to adjust from light changes. Only one eye is prominent but when I saw the specialist he said my other eye was doing odd things too. I never found out what that w
  6. You guys are a wealth of knowledge! :hug:
  7. Sometimes I do feel like I know more than the doctors, about these types of conditions anyway. Actually, I do know more than the most I've seen. I'm not bragging, I've just done so much research and my local docs haven't even heard of some of this stuff until I bring it to them. I've been to Dr. Randy Thompson. He was great but he's too far away for me to see on a regular basis. He is more than willing to work my doctors here but no one seems to want to call him and run things by him. In fact my neuro, who's pretty much given up on me, ran me through an ansar test and keeps reffering back to i
  8. I'm 40 and getting worse. I'm fairly convinced that there is something genetically wrong with me and that causes dysautonomia. My grandma use to faint all the time when she was young but as she aged, that has stopped. My daughter has had at least 2 faints that I know of, with several near syncopes. She just recognizes the symptoms now and sits down right away. My uncle was playing the sax one time and had half of his body completely lock up on him. He managed to call 911 but after a battery of tests they said it was idiopathic and sent him home. All of us are having other strange symptoms. My
  9. I'm no expert, can only share my story. I had mine done during the TTT. They did monitor my waves and pulse during the valsalva test but they also measured my blood pressure before and after, possible during. I cannot recall. But my report talks a lot about my pulse and recovering time, telling them a lot about what was going on. I'm sure they can see a lot without your BP but I can't imagine that knowing how it was reacting during the testing time, would do anything but help them. I do know that I was pretty surprised how much they could pick up about my body with the electric waves. I was su
  10. Issie, She swears by kinesiology. She said that she had too many patients like me come to her and say they got relief in a few sessions and that is why she started looking into it. I have a hard time wrapping my head around it but after talking with family members who are in the medical field, I decided to give it a try. It's just too pricey though, for me. If I really believed in it, I may scrape together the money but honestly I believe in the hard work of scientists and if something could magically cure you, they would have been all over it. That isn't to say that I don't believe in some na
  11. I'm pretty close to done with my neuro. I hate to be negative but she seems to have given up on me for the most part. I told her I had to figure out what was going on and she told me that I needed to brace myself for the real possibility that I will never know. She said she has little faith that any doctor will figure it out and that I'm not alone, which is why she is turning more towards Eastern medicine. She's been pushing since day one to go to a kiniesologist. At first I was skeptical and then decided to give it a try. After I found out the costs and that it's not covered at all by insura
  12. I have an appointment with my neurologist Tuesday. I chose her because on her web page it said she tested for dysautonomia and I was so excited to find a local doctor that knew something about it. I have my doubts about her but I'm trying to stick with it for a little longer. She did an ansar test on me, said the results indicated that midodrine is what I needed and just put me on that and sent me out the door with a recommendation to see a kiniesologist for my emotional issues. (My father died almost a year ago and all the docs have decided that his cancer and subsequent death is why I'm sick
  13. I just woke up and trying to get ready to head out of town for the week. The fog is too thick to read and abosrbo all this right now. I did want to say thank you to all you for responding and when I get in tonight, I'll take the time to read it more thoroughly.
  14. Thank you Issie. I have a whole lot more going on, that was just the brief list. I do believe that those of us with similar issues need to get together and put pieces together. That is why I like some of the polls around here. I keep getting told that anisocoria is common among everyone and it doesn't have anything to do with this condition yet I have spoke to sooooo many people with dysautonomia who have it. And that is only one example that we all have been through and heard before.
  15. Actually that title isn't quite right. I've got answers, a whole of no's. I was certain that I had a problem with mast cell disease but I just got my test results back and everything was normal. I can't recall exactly which tests the doctor did but I had 24 hour methylhistamine urine test, I'm pretty sure NE levels, and a couple of others. I'm going out of town tomorrow and then the next week I have an appointment with my neurologist, I'll get the hard copy of the results then so that I can go over them myself. When they called to say everything was fine, I started crying. My husband got mad a
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