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Everything posted by StephL

  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.
  16. I'm fairly educated on this condition, not nearly as much as others here though. My point is that I'm no doctor so I don't know what that strip is called that comes out of the machine that shows your electric waves. Whatever that is called, it should be a part of your results. I have mine. Well, I have papers with copies on them. If you had the test done at a hospital, you should be able to go there and ask for it, forgo your doctor. Otherwise, I would try insisting that you get that with your doctor. I cannot imagine any reason why that strip wouldn't come out during the test, that is what they use to make their report.
  17. This is why I drove 7 1/2 hours out of my way to go back to my doctor's hospital to do the TTT. I didn't trust the doctors around my area to do it completely. I would make sure you get the actually results no the final report, if you don't already have them, and take see if you can submit them to someone else. Ask their opinion. I don't trust any report I'm given, I want to see hard copies and then I go through the whole thing and research it all.
  18. Is there any norm to your heart rate at all? Or is it just always all ove the place? I ask because my heart rate is very blunted. Usually in the 40s, maybe 50s. It doesn't react properly when upon standing or movement. Usually it stays blunted all together or it's tachy for a minute or two and then drops quickly back down into the 40s. My TTT report specifically said that I should NOT be on BB because it would blunt my pulse even further. Is it possible that your doctor is concerned about that?
  19. I too have been told I need a LOT of water but it makes me sick. I have found that it helps to keep water in a bottle next to me all the time and to take small sips. My biggest problem, for me, is the constant nausea. Adding anything to my stomach makes it worse, water included. If I take small sips though, rather than trying to gulp a bunch, its easier. If I'm not too careful and drink too much water, I won't have any desire to eat all because the water is filling me up. I've already dropped 50 pounds and I can't afford to lose much more weight.
  20. It stays in the upper 40s to lower 50s.
  21. I was given some suggestions and meds. The meds made it much worse and I'm on a couple of things not many though. I see the neurologist in a few weeks. Hopefully we'll get this all looked into.
  22. My TTT results seem to indicate that I'm not on par with one certain condition other possibly NMS. I've copied and pasted this from another site I go to with friends. This is only part of my report and it's summarized. I should just scan the report and upload it but I'll just post the basics. I am correct about the pooling in my abdomen, it's not my legs as much as my stomach which is causing the nausea and bloating. If they can't get my pulse up they want me on a 30 day heart monitor and to see and electrophysiologist. My low B12 levels could be causing autonomic neuropathy. It does say I should be on phenobarbitol so I need to figure out if that is the same as phentermine or if the pharmacy made a mistake. I have a very strong parasympathetic response going on. Deep breathing: The patient shows a very blunted heart rate response to this test of the cardiovagal innervation. We usually just see the marked blunting with people who have really strong parasympathetic responses or if the cardiovagal inneravtion has been damaged such as through diabetes. In that, you just see extremely high heart rates and the low heart rates we see here. Hand grip test: Again, the patient shows an almost cardioinhibitory response, which is a hyper-parasympathetic response to rule sinus node dysfunction and she has a a normal blood pressure response. Audio stress test: The patient shows a markedly blunted beta-andrenergic and blunted alpha-adrenergic. This tests the higher cortical centers of the brain in the efferent pathways. Usually when you see blunting of of theses tests, it has more of a startle response than it is an actual cerebral problem, although in this patient, it certainly needs to be considered, especially where her heart rates are staying throughout the entire tilt table testing. 3 minute head-up: We expected the patient to have a 20% increase in heart rate upon standing and to maintain it through the 3 minutes of 80 degree head-up tilt. The highest the patient got was 3 beats a minutes above baseline during the entire test and then her heart rates stayed essentially baseline or within 1 or 2 beats during recovery period even through her heart rate stayed above baseline, so this may indicate some evidence of faulty baroreflex modulation. Valsalva maneuver: The patient had a Valsalva ratio of 1.7, which is greater than 2 standards deviations below the mean for the patient's age and sex. There's more but I'm distracted right now......
  23. My usual is high 40s to low 50s but it's not unusual to see it in the low 40s either.
  24. I can't give you any info but I take 1 mg nightly and then upon occasion if I'm having a bad panic attack but that almost never happens anymore. My doc wanted me on Lexapro but my insurance doesn't cover it and I can't afford it monthly so I stuck wit the Zoloft. Those two things have improved things. Note, I'm not healed, just feeling better than before I was on those.
  25. He didn't say why it was low and they just set me up for monthly shots. Its not techincally low. 286. But there was a note on the lab report that studies have shown that some people "experience neuropsychiatric and hematologic abnormalities" when their B12 is between 200 and 400. My problem right now is that my PC doesn't know much of anything about dysautonomia. I've put a call into Dr. Thompson but he was sick yesterday so I have to wait until he's feeling better to see if he agrees with the course my PC is taking. The exciting news is that I found a doctor very close to home that knows about autonomic dysfunction. I have an appointment with her at the end of the month. It seems like a year away right now but I'm just so tickled that their might be hope of someone near by that can help me. Dr. Thompson did tell me that B12 can be lowered by florinef but I had already gone off of that long before I had the bloodwork because I was having problems with all the meds I was put on and decided I was better before I was on all that. I was not only sicker but I was experiencing episodes of rage, so very unlike me, and I would cry all day long. Perhaps that is because the florinef was dropping my B12 too low, I don't know. Thanks for the suggestion, I will look into the pernicious anemia. I think I did stumble across it yesterday when researching but kind of overlooked it.
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