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StephL

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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, she came home for a few minutes but she was in a hurry. I did have time to quickly take her BP and pulse while sitting and upon standing. There wasn't some big difference but I know there are links that show the changes in BP and what condition they MIGHT relate to. Does anyone know where those links are off the top of their heads without doing a 20 minutes search looking for them? Or, even know what the normal changes are in BP and pulse going from a sitting to standing position? When she is home sometime I will do a proper poor mans TTT on her but for now all I got was, sitting 123/78 pulse 69 standing 124/86 87 One my own personal front...I know I'm rarely here but for those who know that my two big issues are gastro and blunted heart rate, I've gotten desperate and found a new specialist. This one is another gastro but he apparently has two women on staff who's only job is research. When he has a difficult patient to help, he puts these two women on the case. I'm hoping he can help me with my gastro problems at least. I don't see him until the 4th though.
  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 was because he sent me straight upstairs to opthamologist neurologist.
  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 it, "Well, the ansar test says the medicine you should be on is midodrine. If you don't like that the ansar test says the next medicine to try is nortriptyline." I have issues with her basically plugging me into a computer and it spitting out results after 12 minutes of testing me. The day I had the test done, my pulse was in the 60s, that is rare for me. She never once looked over my TTT results because she is trying to prescribe me stuff that blunts the heart rate when mine is already pretty darn low. She uses that ansar test and ignores all my other issues. I was so excited when I found her because she was the only person I have found locally who said they test for autonomic disorders. Now I think she just bought some fancy machine and doesn't really know squat about the condition. I really need to get some paperwork done for Vanderbilt. I've received and email from them that gave me the impression that they are interested in my case, possibly my whole family, but I need to get the papers filled and faxed. Thanks for the info on the urinary tests. Right now for my sanity, I need to do this in small steps. Like I'm waiting for my MRI and lyme disease results. If/when that shows nothing, then I will make a couple of other decisions. I can't remember if I mentioned it before but I have a good friend with hep c and she has a gastro doc that she swears by. He has two ladies on staff that do nothing but research for him. Apparently a lot of people go to him for unexplained digestive issues. I know I have a neurological problem but my stomach problems and heart problems are my worse two symptoms. I may seek out an electrophysiologist for my heart, we'll see. What I would really like to know is, is there anything we can do to get my baroreceptors/baroflex back on track. I'm pretty sure that is the one thing that is directly failing in my system. Several comments in my TTT reports show that I have issues with that. I asked the doc and she just said exercise is the only thing that will help. Exercise is a whole other issue for me, I'm not up to typing all that out right now.
  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 point is that even though the fainting stopped for grandma, the rest of the problems are getting worse for all of us. Maybe not my daughter so much but she is 20 and refuses to recognize that she may have this condition as well, she won't tell me when she isn't feeling good most of the time. So, my grandma is in her 70s, my uncle is in his 50s, and as I said I'm 40, all of us seem to be deteriorating.
  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 surprised that they knew before me everytime I started to flush.
  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 natural or Eastern medicine but there are some things that are just too much for me.
  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 insurance, I decided I just couldn't afford it. She backed off after I told her that. She did agree to do a lyme diseast test and a head MRI. If those come back fine, I am going to find a new doctor...again. Here are the results from my 24 hour urine collection... Epinephrine 5 norephrine 27 Total (E + NE) 32 Dopamine 255 Tryptase 5 Methylhistamine 158 Histamine 0.012 Creatine concentration 212 creatine 1.25 Apparently that is all normal.
  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. I've stopped telling doctors that I lost my dad now.) Anywho, I'm a very skeptical person and telling me I can go see someone two or three times and they will release my lifetime of issues didn't set well with me. I did the research and spoke to two people in my family who are in the medical field and they both said to try it. I was going to but I can't afford it since it's not something insurance covers. My point here is, do you guys have any suggestioins that should ask for? Tests? Possible conditions to be tested for? Besides getting the normal lab work that everyone gets, every few months, I've had my cortisol levels checked, histamines, tsh 3 gen, ferratin, transferrin, tissue, transglutaminase antibody IGA TTG, Antibody, IGA, gliadin antibody, immunoglubulin A. I believe she also tested my norepinephrine levels too and said they were normal. I don't have my hands on the actual results from the last labs yet, I'll get those on Tues. I have problems on and off with my urinary system so I plan on asking about nutcracker syndrome too. I also want to find out about my sweating and plan on asking for a qsart. I haven't had a brain scan in at least 4 years and I've never had a spinal scan other than my neck and then whatever shows up in abdominal scans, so that might be a good thing to do. Do any of you have opinions on Ansar test? It didn't seem nearly as accurate as the TTT. Have you had or heard of sympathetic neuroimaging test? Apparently they can use this for my heart as well as my noggin' to see if there is any nerve damage. Just for inquiring minds, I am 40 years old. I have had strange symptoms my whole life but I'd guess that puberty is when they got much worse.
  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 at me and can't understand why I was upset that I don't have a disease. He doesn't get it, none of my family does, nobody who doesn't live with chronic disease seems to truly understand what it is like to be sick and want more answers. My hubby thinks I should just accept that I have dysautonomia and be happy I know that much. I'm not that kind of person. I knew something was wrong with and I diagnosed myself, found a doctor to help, and got results. I know in my bones that something else is going on. My whole family has something wrong with them, some faint, some have seizures that docs said are idiopathic. Almost all of us are "off" somehow. I'm so lost and confused right now. I want answers, I want to give up. I want to bury my head in the sand but if I do I know I'll keep getting sicker. Anywho, this wasn't just to complain. I have a couple of questions too. Lyme disease, how many of you have been tested for it? Is it common that people who present with dysautonomia have lyme disease. MCAD, is it possible to have it but the tests don't show anything? Another thing. I have two different reports from MRI's and catscans. The MRI was of my neck, several years ago when I first starting showing the more strange problems. It said I had degererative disease in my cervical region. Then this past spring I was in the ER and the catscan showed I have degenerative disease in my lumbar region. Is it possible that is causing my dysautonomia? I've posted my symptoms here before but since I don't post often, I will go over them briefly. Almost always bradycardia, in the high 40s to low 50s is normal. Moments of tachycardia but they are brief and my heart goes into bradycardia much more quickly than the average person. Constant nausea. 50 pound weight loss in less than a year. light headed anisocoria low blood pressure that doesn't get high until about 15 minutes upon standing and even then it will not maintain itself When I had my TTT they said I was very unique and they had never seen a person who reacted to the different tests they way I did. Dr. Randy Thompson said he's never seen a case like mine. My blood pressure was all over the place and did opposite of everything they expected. Several times the report said I should be investigated for diabetes and cerebral damage but my neurologist and PC both blew that off. I have spoken to one of the people from NDRF and they suggested I contact Vanderbilt since so many of my family members are having problems too. I will work on that this week. I just want my life back. I know that probably won't happen and I need to learn to live a new life but I don't feel like I can start over until I have the answers. Thanks for listening.
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