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Everything posted by sugartwin

  1. That's not true. Joint hypermobility is a necessary feature for the diagnosis of classical type, whether type 1 or 2. It's true that as a hypermobile person ages they stiffen and often develop arthritis thus losing their flexibility but Classical with no history of hypermobility can't be diagnosed; it's one of the major diagnostic criteria. There are types with much less dramatic joint hypermobility like the Vascular type, where it can be limited to the small joints (like the hands). This type is rarer and comes with more severe manifestations as rubytuesday was saying. Life span is often limited because of the aneurysms that result from the weakened type III collagen. Dysautonomia is not as common in this type.
  2. EDS is a catchall name for six different genetic connective tissue disorders that share hyperflexible joints as their main manifestation. In its most common forms (the forms that tend to cause autonomic problems) it affects joints, causing subluxations or sometimes outright dislocations. There are often skin manifestations, with the skin tending to be stretchy, soft, prone to easy bruising and easily damaged while being slow to heal. Autonomic disruptions are common, affecting between 33-77% of sufferers of Classical and Hypermobility types (the common forms I mentioned earlier.) I'd say the main symptom is PAIN. I think one study found 97% of people with Hypermobility type (the most common type) suffer from some pain. I'm sitting here in pain right now, typing this. There are also a lot of distinctive little things like easy bruising, premature arthritis, flat feet, recurring tendonitis/bursitis, etc. And of course many people with EDS has POTS or some other form of autonomic dysfunction. I'm sure other people will chime in since I'm sure I've forgotten some things.
  3. My mother was diagnosed recently in her early 50s, of course there's me, and now my younger sister (26) has started to show symptoms. My maternal grandmother has passed on, but she almost certainly had it. I have a second cousin with on and off tachycardia which hasn't been diagnosed as anything in particular but was troublesome enough to interfere with her work schedule. Of course, all this is almost certainly due to EDS.
  4. This study is interesting because it posits that so many people with POTS have EDS that it wonders if people with POTS shouldn't be separated into people with EDS and people without. I actually think that isn't a bad idea, for research purposes, considering that no one seems to be able to nail down the exact physical cause of autonomic dysfunction in EDS.
  5. I kind of experienced a milder form of this...um...in reverse. Before I got smart GI doctors, who knew about my slow GI tract the old ones would tell me to eat a lot of fiber. And all that fiber would harden as it sat and my body withdrew water from it. Since I have EDS my membranes are just as fragile as my skin. So when I would go it would look like a crime scene. Just blood everywhere. I had to get an iron transfusion eventually. You say you suspect EDS, well if you do have it your skin breaks easily, you bleed freely and you heal slowly. You might just have to wait it out. Like you said, better to eat softer foods to let your esophagus heal.
  6. Sinus tachycardia. Not Flaring Laying: high 70s, low 80s Sitting: 80s Standing: 110-120 Flaring Laying: 90s Sitting: 100s Standing: 130-140
  7. Although I started having seizures (similar to grand mal, but non-epileptic) before I was diagnosed, they are definitely related to my dysautonomia. When my blood pressure is too low I'm prone to fits of them until my pressure is restored either by infusion of fluids or by enough time spent recumbent. I think the proper name for them is hypoxic seizures. They were really difficult to deal with, not to mention terrifying.
  8. Type three is diagnosed clinically from family history, your medical history and your signs (hypermobility, etc.) There is one gene associated with type 3: the tenascin-x gene, but its mutation only accounts for 10% of cases, so it is very rarely tested for. In the classical type there are two genes, but they only account for 50% of cases. I think in type 4, vascular the gene they found accounts for 98% of cases.
  9. This could be a low-CSF pressure headache, not uncommon among people with EDS, especially Classical. It wouldn't necessarily be visible on a CT, might take an MRI. http://www.ncbi.nlm.nih.gov/pubmed/14683542 There's a link about the known association. Here's a link about intracranial hypotension, the situation you could be in. http://www.medscape.com/viewarticle/467001 Full disclosure, I'm a researcher who interprets data of a technical nature for a lay audience. I am not in the medical field. And let them worry about wasting their resources. You worry about you.
  10. I wrote a comment saying just that... or rather I tried to calm myself down, and then comment. The "it's not a disease" line really slew me. I mean yes, it's technically a syndrome, but then, so is AIDS It's the same kind of thing as from the NYT article. The diagnosing doctors it seems are the source of these images of POTS as 'less than real.' Which is troubling since doctors like Stewart pioneered so much of the original research if I remember correctly.
  11. Right on the heels of the New York Times article, another mention of POTS. http://www.huffingtonpost.com/barbara-hannah-grufferman/postural-orthostatic-tachycardia-syndrome_b_1019879.html
  12. Corina, I'd like to read it as well. I tried to get my doctor to prescribe it with no success, alas.
  13. For people in whom the onset of POTS wasn't sudden they've usually had elevated levels of catecholamines in their blood for awhile. Before POTS becomes pathological it can manifest either as anxiety or "goal-directed activity." That's my idea anyhow. And doctors don't have any trouble attributing behavioral traits to a physical illness if they observe them. Like in Williams Syndrome, for instance. "The messages of how you feel are not reliable," though. Really? If you feel badly, you feel badly. If you feel nauseated, you're nauseated. What exactly are they trying to say? It's like they're giving with one hand and taking with the other, like my grandmother used to say. Either POTS is a legitimate illness or it isn't. Because if a doctor says something like the way they feel isn't "reliable"casts an air of doubt over the whole thing.
  14. Issie, unfortunately not. You have to sign up for Facebook to access it. I don't really blame you though.
  15. In just six months I've seen a lot of degeneration in my joints. By 'degneration' I mean increased laxity in the joints that were lax to begin with, and problems in joints that previously weren't a problem, like my neck, my wrists and my ankles. In fact, I have a hard time grasping that it's really only been six months! If I weren't keeping close tabs, I wouldn't believe it. I need to ask my OT lady for braces or supports for both wrists now, because they pop, grind and slip. Something they didn't do AT ALL, just six months ago! When I saw Dr. Francomano last summer, she told me to consider bracing my fingers because of how hypermobile they were. I brushed it off because they didn't bother me. A little over a year later, I'm in OT begging for splints because my knuckles hurt so bad. I can't say what to expect. Everyone seems to be different. My pain has getting worse since a severe illness kicked off the whole downslide for me several years ago. It's rough, because my pain doctors aren't getting any more willing to treat it. As far as Vitamin D, I agree to keep it higher than recommend: 65, even 70. I'm dark-skinned and African-American, so it's really, really hard for me to stay up on D, even on supplements. I'm beginning to think the supplements and my diet are probably my only sources of D. My dark skin coupled with the long winters and bleary weather in Cleveland probably prevents me from making any cutaneously. Also, try Zebras For Life on Facebook. It's more heavily moderated, so hucksters and fight-starters get shown the proverbial door.
  16. Small fibers are all over the body, but for several physiological reasons (explained well in a PDF someone posted the other day) the neuropathy usually affects the longest and most distant fibers first. So it almost always starts in the feet and then climbs upward.
  17. I assume it is poor blood flow. My brain fog is worst when I'm standing, or when I've been sitting a long time or when I've over-exerted myself. Likewise, I can recover by lying down. It has gotten especially bad as of late with episodes of being unable to understand speech or writing or not recognizing my surroundings.
  18. I've had a good effect on my motility from it. Before I would have to use enemas and would go entire days without eating because of how nauseated I was. The only real side effect I had was being drool-y, and that cleared up after a few doses. Mestinon speeds up the GI tract, so if yours isn't slow, that's where the heinous side effects will come in (nausea, vomiting, diarrhea.)
  19. Mestinon would give most people the craps and bad nausea due to the rapid emptying of the stomach. When I first took it, and could feel 'signs of life' in my GI tract for the first time in months, I thoughts to myself, "A normal person would be glued to the toilet right now."
  20. I like it a lot. I take 10mg a day. It lowers my blood pressure much less than metoprolol, which is what I was originally on and it shaves about 40 bpm off my resting heart rate without making me feel too awful.
  21. Your geneticist didn't tell you that EDS makes you bleedy? Here's an abstract about it Bleeding and bruising in patients with Ehlers-Danlos syndrome and other collagen vascular disorders.
  22. I was hoping to see something about high-flow POTS. That seems to be the type I have.
  23. I get them, and my mother did too, when she was younger. It's not so much the nosebleed itself as the fact that it WON'T STOP. I assume mine are part of the bleeding tendency that people with EDS often have. It's cuts too, and needle sticks. I had to go back into a doctor's appointment once because a needle stick that seemed to stop bleeding, started again a few minutes later and pretty soon there was blood running down my arm. I think it's the same mechanism that causes easy bruising, not positive.
  24. I think I'm the only African-American person on a doctor-ordered high-salt diet in the country. Livin' the dream.
  25. I had a not so good experience. I'm unsure how much I can elaborate. It was follow-up I had waited six months for and I'd had five hospitalizations in those six months. I was eager to see if my medication could be adjusted so that I could be more stable. But my appointment was disappointing. PM if you want the details, I suppose.
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