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Tachy Phlegming

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Everything posted by Tachy Phlegming

  1. Oh man, read the comments. The link is more interesting as a illustration of unbelievable bullying no matter what the illness turns out to be.
  2. "These signals are supposed to be minimal when lying down, but they increase drastically under orthostatic stress." Hi Alex, Do you remember where you saw this info and do you have a link?
  3. That sounds bad. You might want to ask if you can take even less here and there. If I put a wet towel or an ice pack somewhere on my body (probably for about a half hour) and I get twitching, I lay off the Mestinon a little bit. If I had episodes like that out of nowhere and wanted to remain on a relatively higher dose, I think I'd often test that way to figure out whether I should reduce it a little. I've never had anything like what you describe but I can't imagine it's good for you.
  4. If you decide to say something, you might try something more understandable. A central nervous system condition just sounds scary and unapproachable (to me at least). If you want to say you have syncope or POTS which entails a heat issue, say that -- and tell what happens to you in the heat. Yeah, they won't get that it's every minute of every day but you will have said what you need to say.
  5. I don't know really but I had the impression that Quest doesn't do it (and maybe it also is only available from the Mayo).
  6. My mom just doesn't do it when I'm around. But I've had the problem as long as I can remember and it was never questioned. I still hear "I only put lotion on" sometimes however. I stay as far away from her as I can when this happens. Sometimes I've taken something to deal with the resulting headache. I think she's been most offended when she doesn't like a particular friend's perfume and I don't even smell it. You might try giving her a list of what she can use. Your reaction sounds really bad; it sounds miserable to sit through that. I might have asked a stranger to switch seats with me in that circumstance
  7. I think what you were told is abominable. Please erase this entire post however. I am very careful about what I write and I would not want to be quoted as having written "I think I would try again" in this type of situation. I didn't write that and I wouldn't respond that way.
  8. I generally haven't overdone physical activity. I had always been active but I certainly always stopped more intense physical activity when I felt faint or the activity impacted my breathing too much (and yes, that would happen before it did to anyone else always). After being on this site, I figured out that more rest and more lying down whenever I wasn't upright would be better for me. It (in addition to keeping cooler and taking meds) made a big difference. However, I have also become interested in using the extra rest for doing things I had never done in my life because it didn't feel good. For whatever reason, because it just hadn't felt good and I hadn't even paid attention to what I did and didn't do, I just stopped when I didn't feel like doing more. But now, it really interests me to see what I really can and can't do that everyone else does. And it's kind of nice to be able to get more done because I know better how to rest. My sense is that exercise is good for me for parts of health that don't have to do with this condition. But rest is far superior for making me less symptomatic from autonomic problems. (Maybe that means I don't like either theory ).
  9. I can't get into any link for this article but I think I've got the general idea just from the title. Couch Potatoes May Have the Right Idea Steven Dubovsky May 20, 2013 In this animal study, even mild exploratory activity was associated with DNA damage that in wild-type animals was repaired with resting. Reviewing: Suberbielle E et al. Nat Neurosci 2013 May 16:613 Herrup K et al. Nat Neurosci 2013 May 16:518 Any takers for DNA repair? Sounds good to me.
  10. I do very well on that med. I get some sense that they could do better and more exhaustive testing for whether someone needs it but I also get a sense that some of the testing would give false negative results -- so there are reasons to just try it. I wonder if meds which do the opposite (they exist) would help you VetteSage. Sometimes, some of the people on here have been given those (often a bad experience but there are nonetheless times when those should be tried). Nobody tried to figure out why Mestinon (assuming it wasn't Gabapentin) made you weaker? Did they say anything about why the meds may have come close to shutting down your kidneys?
  11. I would guess he should check your B12 levels (there are more sophisticated tests as well that can be run to check this, see below) and maybe folate. B deficiency can be a cause of neuropathy. I imagine that's his theory. The most common other cause is diabetes. If you think it might be something else, good luck! I'd bet no (or almost no) doctor wants to bother. I imagine not thinking you have diabetes and not wanting to bother, he just decided to try B vitamins. But really, it should be checked. It doesn't randomly help nerves if that's not your problem. http://voices.yahoo.com/two-types-vitamins-may-help-peripheral-4681261.html?cat=70 I guess, like you, I'd kind of doubt that's what bugging most people on here but I've seen some people write about the importance of checking B12, homocysteine, and MMA, in line with this type of article. http://www.aafp.org/afp/2003/0301/p979.html Here is another article which may be of interest: http://circ.ahajournals.org/content/111/19/e289.full
  12. It's encouraging that these new doctors are taking a keen interest in you and are doing further tests. The only new type of med seems to be the Singulair. It will be nice if it works; you would know more about the mechanism of what is wrong and have an easy treatment all in one. Thrush would probably be due to a steroid nasal spray as opposed to Clonidine; but it sounds like you need the spray and will have to just treat the thrush. Here is an urticaria treatment you might want to think about or ask about if the antihistamines and leukotriene inhibitor aren't helping enough (some of the tests you are now getting might shed some light on whether this kind of med will work for you): http://www.nejm.org/doi/full/10.1056/NEJMoa1215372 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551415/ (you might want to read the second one carefully (more carefully than I did, ) and see what you think you might have and what meds you think might work). These doctors sound nice and helpful but as soon as you can, do still try to get a very concise "name" and full description for whatever condition or conditions you may have because you have needed it and may need it again for when you become symptomatic and can't work.
  13. Aw, ukwildcat, your mom suggested you should "will it" away and your friends are frustrated? How can you will away "zaburzenia autonomicznego ukladu nerwowego"? http://forums.dinet.org/index.php?/topic/22672-pots-dysautonomia-around-the-world/ Maybe you need to have it explained to them in ways they know certainly they don't understand, because English doesn't seem to be working too well and they think they have you all figured out. (And for those of you who thought you wanted to know how to translate it into words friends or family could understand, you might want to stick to English... )
  14. Yippee! I can tell anyone who might want to know that there is at least one other person in the world who dresses wet. Maybe one day it will be a fashion statement.
  15. Did you see two posts? I thought I posted and then rewrote it when I didn't see it. At any rate, I think getting a good doctor for fully investigating "urticaria" will in fact be difficult and I have no idea what speciality you need to see. It may in fact be hematology (I might ask for that in your shoes because you need odd blood tests). I get the sense that they are research-oriented and willing to take the time to understand slightly more complicated medical issues as well as go to bat for patients if need be (and they probably will give you decent meds which are a little more tailored based on tests). Dermatology might start you on your way but they can be a little simplistic and I don't think they do a lot of blood tests (although they might be pretty inclined to give you steroids before you can get tests -- may be good for treatment, rotten for diagnosis). Allergy probably will get you nowhere ...glad the one you saw had heard of cold urticaria but that's hardly something you couldn't find out on your own.
  16. Hi Kris, I think you do need to have a more definitive diagnosis both for treatment and for getting accomodations and financial assistance. If I were in your position, I would focus on the word "urticaria," bring in the following two articles, ask for just a few key tests, and then ask for heavy treatment and a proper description in your medical record and/or letter you can use for getting the help you need outside of just meds. The following first link delineates a few different types of urticaria, one of which you might wish to have put in your medical records, along with more subtle test results so it's not just "oh hey, cold urticaria." The second link details hypocomplementic urticarial vasculitis for which you might want to ask to be tested. (You might also have them consider the autoimmune type). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2492902 http://en.wikipedia.org/wiki/Urticarial_vasculitis Somewhere in those two links, there are references to EBV, thyroid abnormalities, a lupus-like appearance, a passing reference to mast cells (which should be left at a passing reference), abdominal pain, swollen hands (angioedema), weight gain, possible kidney problems, and hypotension (I think on here, we think of racing heart and hypotension as two sides of the same coin). If you were to get positive test results on one of the more serious types, it really is a systemic disease which has to be treated and not brushed off as "hypersensitivity" and "a local defect." I'd guess too, that it's just one defect -- but still, the conditions outlined here do indicate it will get your skin, make you collapse, and give you a big punch in the stomach. You'd really need major treatment and should be able to get a decent letter and note in your records. But the doctors would need to "focus" on urticaria, as it's described in the standard literature, not by what they dream up in their minds. Hypersensitivity, while perhaps true isn't a complete description of urticaria. What is described in these articles (and it's only urticaria) is in fact systemic. And yes, maybe they'll find you have some better understood systemic disease at some later point -- but it's sort of unclear if one is always found. What you have now, 1/8 UCTD (hey, looks like scleroderma), 1/8 lupus, 1/8 MCAD, 1/8 EDS, 1/8 -- "hey, some localized problem," 1/8 -- I was once positive on a cryofibrinogenemia test, 1/8 -- the Mayo said I had a hyperadrenergic presentation, 1/8 -- the latest doctor asked me "who are you anyway and why are you important?" amounts to a whole lot of nothing. But again, I'd go in asking about urticaria, and not in a vague general sense. I'd point the doctors in the direction of these articles and ask for very specific tests. (You might as well get the cryofibrinogenemia test a few more times just to be sure while you're at it but given some of the other symptoms, you'd really need to check if that's typical of most of those patients). http://www.medicine.wisc.edu/~williams/cryofibrinogen.pdf
  17. People have trouble telling a date the condition with which they've been diagnosed: http://www.huffingto..._b_2195419.html While I really believe that what we have is quite excruciating and gets you feeling close to death (and very many people might choose not to want to be with someone who has it), I think that being diagnosed as being attractive, particularly by a cardiologist is something you might wish to tell a date or put on a dating site. After all, people do respect doctors' opinions.
  18. I walk and I can go pretty long distances (and I frequent the forum). I would not do it in hot weather. Under those circumstances, I think maybe I could keep putting one foot in front of the other but well, if I collapsed, then I couldn't... and if my pulse were somewhere between 120-170 it would be dangerous. (But I've never had "stamina" anyway and it's not power walking). As far as wanting to compare, in your situation, I think I'd feel compelled to ask on this forum. Yes, people on here probably are sick due to a few different causes. But there is also the question of presentation. Sometimes, the same disease can look pretty different. Even when you are more severely ill, if you get a real sense that someone on here has something pretty close or that a particular treatment sounds right, sometimes that can go a long way to getting you closer to normal.
  19. I've had that. I guess I've found that I have to be in a position to really know how to fix the problem medically and get the doctor to treat based on them for the precise results to really "matter" for medical purposes. At least one thing I was never told was quite appalling and did tell me a lot -- when I found out what people with the same results had disease-wise. But the results had absolutely no meaning to the doctor who ordered the test nor subsequent ones. All I can think is that their medical training was a disaster (because yes, you would need experience to interpret it). I have wondered for years why the test was ordered for me and why they ever measure it for anyone. And yes, I sometimes really do wonder if those tilt tables are used for ping pong in off hours and why they even have them... considering some of the abnormal results which result in no treatment which you see on this forum. It happened to me today. I saw part of the record which was made as I was leaving the office. I was going to ask the assistant to ask the doctor to talk to me about it -- until she told me she sees the same finding all the time. Then it mattered to me as little as it had apparently mattered to the doctor. (And I got what I needed at the appointment apart from that). But really, for the one that did matter, I had assumed even after getting the result that I wasn't told because they saw it a lot. I don't think that now (and if they are seeing it a lot and not doing anything about it, a lot of people are suffering immeasurably).
  20. I was writing about the first post, peregrine, sorry. Do you feel ok on your med dosages or has there been talk about changing those or otherwise tweaking your meds?
  21. I think I'm missing something. This would appear to be a calculator from a reputable source: http://www.mayoclinic.com/health/target-heart-rate/SM00083/ It doesn't give numbers for below the age of 18. Are you younger than that?
  22. From your communications on here, did you come across a pattern with certain meds which worked for some people for 2-3 years and then stopped? I'd be interested in knowing if there were particular meds which worked that way. I've sort of seen on here that beta blockers can come and go and certain anti-depressants ... My sense is that some of the problem for people who have been trying forever (10 years) is that people can't get some or all of the meds they would wish to try. When you asked, do you know whether they asked for meds they couldn't get? It was hard for me to get certain meds. I'm just impressed with some of what you have gotten in testing, am really hoping that you get meds which do a lot better than 2-3 years, and just reading about how carefully you think through everything (yes, it's important to be exhaustive even where it looks like a totally different area of medicine) think there has to be a good possibility that you can do it.
  23. That all makes great sense Rich. I would have thought the same (would have=did). Lucky for me, it didn't work out that way. I take one which in theory raises bp and one which lowers. And here's the trick. It has seemed to all work out. I might not have expected it to as well as it has ... In fact, if what I take lowers my bp too much, it is a world of difference from when my body does it on its own. I feel nothing if a med lowers me a little too much. Yes, those are the best parameters we have to use to measure how we are doing. But hey, who among us is going to complain if we feel good enough despite the numbers? When you look at these meds to see what you want to ask for, you will see certain things which make you say uh-oh, don't want that (as you have done) ... but for some of us (and I'd bet for you), if you just look for the ones with the best probabilities for success (you like most of what you see), you might be really in luck. If at first you don't succeed, well, there's trial and error. No fun but it sounds like some of the people on here have ended up doing that and finally found meds which do at least something ...
  24. Yeah, you can get them to stop ... When I said "stop, stop" the techs I had said, just wait a bit, we're getting good numbers. And they make you sign a release. You might want to make sure everyone they've tested walks out. I think I asked.
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