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circuscat

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  1. Hi Mare- I was hoping you were north bay so we could at least meet for coffee! I have all the stuff you mentioned too. And I know what you mean- you don't want to have anything, at the same time if you are honest with yourself you know that something isn't right. I also have flares where I honestly feel like I can't go on living like this, and then times where other than being tired, I feel normal. During those "normal" times it's easy for me to talk myself into all of it being a mistake, or not happening, etc. Then BLAM!!!!! I get flattened out of the blue and then I remember, oh yeah- this t
  2. Hi Mare- where do you live? I'm in Mendocino County. My Tilt Table Test was normal- or actually, BORDERLINE abnormal but nothing that he would treat or order further testing for. That was a little disappointing. My BP didn't fall below 115, which is HIGH for me. So I'm a bit confused at this point, seems like yet another instance of "I think you have ________; oh, wait a minute, no you don't". I do have other things like heat intolerance, the GI stuff I guess is considered part of autonomic dysfunction, eustacian tube that doesn't respond, extreme light sensitivity. Plus if I stand up quickly
  3. HI- thank you for that, it's very interesting. I have been diagnosed with chronic fatigue but had never heard of ME. I'm too tired to process it now, coincidentally (talk about brain fog). Just got back from a long day seeing a cardiologist for a baseline visit (two hours from here, so a lot of driving) followed by picking up a home sleep study monitor- then the drive back home. My husband walks 45 minutes a day and gets "endorphins". We always talk about how I don't get that feeling, ever. I just get tired. I can't walk as long as he does but was walking 20 minutes before I got so sick last
  4. Claired- honestly, I have no idea. The test really affected me mentally and emotionally and I was in a complete fog when it was over. He showed me results and graphs and such but I was so out of it by the time it was over all I can remember is basically "wah wah wah BORDERINLINE wah wah wah DIDN'T DROP BELOW 110 wah wah wah wah FLIGHT OR FIGHT wah wah wah". I was also working on a headache from tension and no sleep all night the night before, and I have discovered that when I have a headache my BP rises, so maybe that skewed the results a bit? I have a follow-up visit with him in May so hopefu
  5. Hi Dizzy Girls- I'm very new to all of this (ALL of it!), and have been doing a lot of reading. It seems like I have recently read that BHMS is now considered EDS and that they don't like to use that name anymore because the "benign" part of it is misleading, making it sound harmless when it fact it can be debilitating. I could be wrong- like I said I'm new and I have been reading tons of materials, so I could have gotten it wrong.
  6. Thank you Chaos! The Marfan's Clinic is in the same hospital system, and I am seeing a cardiologist there for evaluation. So she will have access to all of it and maybe she will have some thoughts on it. I do have autonomic symptoms and he felt that likely I have ehlers-danlos and that would explain them. Although I'm a bit confused about how EDS and Marfan's differ. I do have very tall relatives (as in 6'7" tall!). I got the paperwork today and they want a complete story of my life and the lives of all of my relatives, lol. And asked for family photos! At any rate it should be interesting
  7. Wow, katybug, it sounds awful. It was stories like yours that made me so nervous about getting it done! I struggle with nausea and vomiting anyway, so I figured if anyone is going to get sick it will be me. But other than a tiny bit of nausea, not even my "normal" amount, my tummy did fine. I have never gotten motion sickness- have been on rough seas, turbulent planes, windy roads, etc. I don't know if that has anything to do with it (probably not, come to think of it). Also- I don't sweat (which makes hot weather unbearable) and did not have an issue with that. The TTT wasn't awful, but certa
  8. I wonder if generally teens are the first to be diagnosed as opposed to younger kids, not because it doesn't exist, but because their symptoms either go unnoticed because they can't really communicate them, or because they are diagnosed with other things first?
  9. Actually I have heard great things about UCSF Pediatrics. The friends I have who have taken their children there for treatment have been treated very well. My issues were in gastroenterology and my daughter with their Teen Clinic (for eating disorders). Good luck with your daughters! I actually have hope for young kids- medicine is moving so quickly now and they are coming up with amazing new treatments all the time. I honestly think the young people with these diseases have a chance at being cured. Someone my age (60)- not so much. But good to think there is hope for the younger generation!
  10. Thank you! Yes- he's very nice, kind of reminds me of Jason Schwartzman of the Wes Anderson movies (Rushmore, Grand Budapest Hotel, etc.). Oh, and I don't know if I can say this here, but I have been to both Stanford and UCSF (for unrelated things) and hands-down I prefer the treatment at Stanford. It's about an hour farther for us to drive (four hours as opposed to three), but you feel like a person at Stanford. I do know people who have been to UCSF and loved it- but my experience there as well as my daughter's was not great.
  11. HI there- Yes, I do have other symptoms of autonomic dysfunction, and have a diagnosis of global autonomic dysfunction from the neuro who referred me to the autonomic dysfunction clinic. But on my patient sheet after the visit the only diagnosis from the auto guy was Ehlers-Danlos, and a referral to the connective tissues disorder clinic for more evaluation, as well as an echocardiogram. However when I asked him (by email because I was too wacky to understand anything he was saying after the ttt) if I do have Ehlers-Danlos, would that explain my other symptoms and he said yes, it very well cou
  12. I had my tilt table test a week or so ago. The results were "borderline" and the doctor said at this point he wouldn't prescribe meds or order any further testing. I showed him my crazy flexible hands and asked him about Ehlers-Danlos and now have a referral to the Marfan's Clinic for evaluation. He said the test was borderline because my BP never dropped below 115. This was really surprising to me, since my normal BP isn't generally that high. I have been taking it at home since and it has never gotten above 105. Last night, for instance, it was 88/65. It is consistently that low. I was very
  13. I was recently seen at the Stanford Autonomic Disorders Clinic and was very happy with it. They work closely with the GI dysmotility department, too. My doctor was Dr. Gordon Miglis and I really liked him. I would think a teenager would respond well to him because he is young and cute and extremely nice. I have been seen by GI, Endocrinology, Neurology (Headache clinic) and Autonomic Disorders Clinic at Stanford and have had excellent, thorough treatment at all of them. EVERYONE is super nice- from the security guards to the office staff to the technicians to the doctors themselves. Really a g
  14. I am VERY new to this and not even sure I have a solid diagnosis of autonomic dysfunction yet. A neurologist I saw diagnosed it based on my history and one office visit, ran a zillion blood tests that were all negative and then told me there was nothing I could do but treat the symptoms. I asked him for a referral to Stanford and have seen a specialist in Autonomic Dysfunction who has ordered a TTT for me, but according to my visit summary there is no mention of autonomic dysfunction diagnosis. I have had horrible tummy issues my entire life, been through the gamut of tests, etc., and finally
  15. Thanks for your response! Even though I get dizzy standing up, I'm so used to tests being negative for everything I'll be surprised if this shows something. I was shocked when my GI motility testing came back showing dysmotility because I had just been through about a year of every test my normal doc could think of (ultrasound, xrays, small bowel follow through, CT scan, MRI, blood work, etc) and every one of them came back "boringly normal". My doctor recommended taking my BP when I'm feeling bad to see if it drops and so far not. Went to bed last night with a terrible headache, nausea, fatig
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