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About toomanyproblems

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  1. I have been tested by a world renown geneticist for EDS and was diagnosed with the hypermoble type at the age 63! And it wasn't even close. They actually gasped at my extreme hypermobility in some of the categories they tested for. There's no genetic test for this type. It's thought to be dominantly inherited. I suppose my dad might have had it but it wasn't striking. I don't know how I got to be that age without knowing or having some of the more horrible complications from a young age, even though I always knew I could do "tricks" others couldn't do. Knowing for sure about the hEDS helps me put together a theory of my many autoimmune problems. If you are continually overstretching joints to the point of tears, however minor, in soft tissue, this is damaged "self" tissue is being released into your circulation. Your immune system is likely to recognize this and be more likely to form antibodies to damaged collagen and other components released, as well as becoming "annoyed" in general, releasing generalized inflammatory chemicals that increase sensitivity to other "self" antigens, thus increasing the risk of autoimmunity of certain kinds. Because certain types of autoimmune conditions tend to follow EDS, I would assume these are the self antigens the body becomes most sensitized to in this syndrome. In my case, I think the hEDS drives most of my autoimmune problems. I'm not sure if my theory is one shared by other scientists but it makes sense to me. For this reason, it may help in understanding why one has the problems one may have, and it may make it easier to get these other problems common to EDS patients diagnosed, even if nothing can be done about the EDS itself.
  2. FWIW one way to start an iv on yourself is to use those scalp vein butterfly needles. All you have to do is stick it in the vein, secure it to your skin and attach the regular iv line. It's not always as comfortable as a regular iv set up since the actual needle has to stay in the vein, but I get the 23 gauge ones and have run many an iv on myself by myself this way. You can easily do it with one hand. with proper planning. I mean when you're desperate, have the supplies, are alone and don't want to go to the ER...
  3. Well, I just want to throw this in because along with all the weird symptoms we have these things can get missed. I had some pretty severe symptoms this week and since I'm such a mess normally I just hung tight onto the sides of the bed and tried to survive my way through it. I figured it was more of the same just worse. Turns out there's a bad bug going around and if it hadn't been for a neighbor calling and telling me he had been sick and describing the symptoms and progression exactly as I had had it, I would've never guessed I actually had an infectious disease. It wasn't the flu but some other bad virus. He went to the Dr three times and missed eight days of work with high fever, aching, coughing, headache, and later vertigo. At the time I talked to him I picked up on the other stuff that I had already experienced and was experiencing but sort of forgot the vertigo part until yesterday (I think -- it's all glomming together :/) I woke up really dizzy. Again, not unusual for me so I didn't think anything about it. Then I started realizing that things were spinning. Still not that unusual for me. I just stopped trying too walk around. Then it progressed to me feeling like I was going to fall off the bed while lying flat on my back my head was spinning so bad. It wasn't until that point that I finally remembered my neighbor having vertigo as one of the later symptoms of his (and apparently my) bug. So the moral of this story is maybe you didn't have this bug with high temps and flu like symptoms like I just had but there are viruses that can cause middle ear problems like vertigo alone and this is also bad allergy season that can cause it too. I've had vertigo in isolation way before I had all this other mess and it can make one feel pretty horrible and desperate just by itself. Add in POTS/dysautonomia problems and things can get hard to untangle. Sometimes we forget the other things that can slip in and mess us up along with the usual. I will say that once I got my first vertigo causing middle ear problems in my mid thirties, I've been susceptible to them ever since. Sometimes it goes away in a day, sometimes days. I never know until it's gone. It's funny because I don't get colds hardly ever but I get this instead. Or I'll start getting as cold and then it goes into my ear. Just thought I'd mention this because even though it feels absolutely scary horrible, especially the first time, and can be dangerous because of falls, it can be a fairly innocuous, passing thing, relatively speaking. I'm not saying this is true of your experience. Just that it's possible.
  4. I get IVIg every three weeks, 60g over two days, a pretty big dose. I just had my fifth cycle this time around. Last spring/summer when I had it a few rounds of it, it helped a lot of my autoimmune problems, including my dysautonomic problems. It's been really hard getting insurance to cover even though I demonstrated clear benefits so I was not able to continue last time long enough to find out if it would actually correct my HR upon standing even though it largely corrected my symptoms. But it corrected things that had been assumed to be irreversible like my gastroparesis. Maybe sometime this summer, with consistent treatment now that insurance is covering, I'll be able to determine the full benefits. I do have adverse effects, mostly brain swelling that manifests as severe headaches but it's worth it to me because it helps so many of my autoimmune based problems.
  5. I don't know what the role of lactic acid is in your question but the long held theory that the reason your muscles felt sore after too much exercise was because of lactic acid build up has been proven wrong. Apparently they now think that is due to micro tears in the muscle. This actually stimulates building of more muscle not scar tissue.
  6. I have not. I doubt any of my docs would want to rock the boat with it wrt possible hyponatremia, given my Addison's. I don't have a POTS specialist. But even if I did, they would probably feel they had to defer to my endo. I would need a lot more monitoring than I'm getting now and I'm already a high maintenance patient 😕
  7. One indication of chronic low blood volume is a problem I've had for at least 12 years is a relative polycythemia. Translated means too many red cells but relative because of low plasma volume making the cell fraction disproportionately high. My plasma volume is at least 20% too low if judged by high red cell count. This has been a consistent finding over the years. No amount of florinef corrects this in me. My sodium is normal. There must be some other factor to correct this low blood volume in POTS patients such as myself that we are not thinking of. And something tells me we will have to solve the puzzle ourselves because I don't see any help otherwise.
  8. I can't help with your survey since I have Addison's but I'm wondering which ref goes with the last statement about the transient intravascular space fluid replacement.
  9. I believe this relative polycythemia is a huge red flag for low plasma volume if no other case can be found.
  10. I believe I have low blood volume and hyper pots. My blood pressure usually goes up with my heart rate upon standing, especially the diastolic. I've also had a mild polycythemia (high red cells) for over a decade. I believe this is a relative polycythemia due to low plasma volume making it appear as though my hematocrit is increased. Unfortunately the test normally done for blood volume involves radioactivity and is rarely done. But all my features add up to low blood volume.
  11. I just want to thank you for writing this. I'm totally with you on this approach. To the OP, I don't understand much about hearts. Oddly, it's a field I just cannot seem to retain information about. I do have some heart irregularities but I have no idea where they land wrt seriousness. My drs say I'm ok so I take their word on that. I don't take their word for so many other things. And rightly so. If you don't feel comfortable with his advice and approach seek advice from others. Go with your gut.
  12. Well, I finally got a chance to quote this old article that I've remembered all the years from the New England Journal of Medicine. It says it takes two to four months to regain suppressed aldosterone activity after daily licorice ingestion. This paper was a big deal at the time because it brought to the forefront the fact that licorice could act similar to a mineralocorticoid and to delineate the mechanisms by which it did this. https://www.nejm.org/doi/full/10.1056/NEJM199110243251706 So anyway, you probably already know this but I guess you'd have to be off the licorice at least another month if you want a true reading on your aldosterone. I hope you have a better response to the florinef this time if you decide to go on it.
  13. I did use to crave salt. I always knew it was bad when straight salt didn't taste salty enough.
  14. So how long were you on the licorice root and how long has it been since you came off of it?
  15. I'm not sure it's *the* most helpful med. But it certainly is a helpful med to tamp down my sympathetic nervous system. Sometimes I only take 0.025 mg. I'm wary of rebound. I'm pretty sure I asked my PCP for it. She was nervous giving it to me because my BP also drops so low but she did with specific instructions. I don't have a POTS doctor. I've been seen by cardiology and had all the heart tests to know my heart is basically ok, but they don't really know anything about POTS, and neither do any of my neurologists. I'm not convinced a big trip somewhere specialized to be rediagnosed for something I've already been diagnosed with is going to help. So I'm sort of on my own. Lots of times, my docs will prescribe me what I ask for within reason. I never want pain meds or addictive stuff so that helps
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