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About leah1321

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  1. I love Kitties! My babies are Cornish Rexes and have ginormous ears. They are missing the upper two layers of fur and only have the curly undercoat (which means they are a lot less allergenic for my fiance) They are soft like bunnies and shaped like greyhounds, but much smaller. Full grown, my girls are six and seven pounds. One was ill as a baby and did not develop to regular size. She is also partially blind, but would have been 100% blind if we had not rescued her when we did. They are 2 and 3 years old and wonderful. I got Elizabeth Kitty Stanton two and half years ago as a kitten. She is
  2. Many of those symptoms may be related to rapid, unhealthy weight loss and the weight loss may be a result of the EE. I do, however, have some similar symptoms. I have leg weakness, gastroparesis with bad reflux but also diarrhea (now well controlled with meds) and I also have mild celiac disease that has improved so much with diet that I no longer even test positive for it in the recent blood tests! (was positive before though). I also get rashes. Vanderbilt thought I had mastocytosis when I went to see them- so much so that they did not even think to test me for other disorders. I was negativ
  3. It was cool to see them talk about cardiogenic disorders and during the EP, they triggered SVT in her. They acted super scared about it, my dr. was excited because he got the response he wanted. My drs. never seemed that worried about me in front of me, at least. I had a radiofrequency ablation that was very successful and I do remember it. I was awake, but "drunk." The shock they gave me hurt but I didnt care because i was loopy. Also, my anaesthesiologist was hot and fun to look at with googly eyes the whole time. I was excited to see an EP study done and they acted like it was a frightening
  4. Hi, It sounds like you might have an unrelated neurological type pain. Burning is often caused by problems with a nerve. Neurontin is often very helpful for this type of pain. I was diagnosed with probably lupus and definite Rhuematoid Arthritis. I have had pain for about 7 years and POTs symptoms for 10+. My dr. only recently decided to treat more than just the symptoms as needed. Now I take several meds that have been very helpful for many of my symptoms. See a neurologist about the pain first then find a new rheumatologist, one that knows about fibromyalgia and about the many many other typ
  5. I live in Brooklyn. I can get to Long Island, but not CT. I would love to do somewhere in Manhattan. When were you thinking? I will be away June 3-20 and August 10-27. I am doing the Arthritis Walk on May 21, also my birthday. I know that is too early, but if anyone is interested in joining me, let me know (I have Rheumatoid Arthritis and sero-negative tentative (leaning towards definite) Lupus dx) mastergaia@yahoo.com Best, Leah PS. I am partial to museum visits where we all get wheelchairs and have a dysautonomia parade! :-) I would love a mini-meeting, of course, too. Just thought my firs
  6. We could do an event, like a walk for Dysautonomia and Fibromyaligia or CFIDS or something. I am doing the Arthritis Walk on May 21 and I am psyched and people understand. i am handing out pamphlets all over related to it. I heard about this site from people at NDRF and DYNA way back when the Dinet was just an information site and not a place for discussion. I talked to Michelle on NDRF (I was leah1321). I felt much more connected then because it was a smaller group and I met some people, including Michelle, at the NDRF conference in DC. I also know people from DYNA on this board. I have bee
  7. yes, i have had these several times. it makes me feel like they think i am a crazy, whiny complainer when I know that something is truly wrong. If I get a weird response, I ask a second doctor of mine to test what he/she thinks and then I decide if I am just overreacting. Sometimes, I will bring up the issue again a few months later with the original doctor and might get a completely different response. One doctor I love recently started cutting ALL of his appointments short and he has nurses do return phonecalls now. I hate this but I learned that he does it to every single patient. At first
  8. I get this sometimes but it gets better after I sleep it off for some reason. If yours is not better when you get up, then get thee to a doctor. Leah PS. I LOVE crochet right now. I am obsessed with designing new projects.
  9. I also have gastroparesis with diarrhea. I had an EGG that discovered that I had almost no movement of my stomach. There is some there, thankfully, but it is slow when it happens. However, whenever any food hits my intestines, its transit is very rapid. I have found some miracle drugs that help. I take ultram for the diarrhea actually. A motility specialist told me to try the opiate pain killer and it was amazing. I went from agonizing GI pain and diarrhea 5 times a day with nausea and esophageal spasms to diarrhea only about once a week. The pain is much better. The upper GI stuff has been mu
  10. hi, I have horrendous neck pain all the time. I manage with lots of drugs, stretches and special pillows. When I have a particularly excruciating flare, I use microwaveable heating pads that smell very yummy. I use an organic bengay like thing and also have a muscle relieving bath lotion. I take a muscle relaxant daily, along with ultram, etodolac and neurontin, but I often have to increase the doses of the first three as needed. I take narcotics for the worst pain. I also had paralysis. It was on my left side. I was forbidden from playing violin and viola and I am devastated about that s
  11. Hi, I take seasonale right now because of irregular cycles, horrendous cramps, anemia and nasty ovarian cysts. I have tried five different types of bc pills. My favorite was ortho-novum but they stopped making it when they started making orthotricyclen lo. The seasonale is amazing for my gyn symptoms and for my POTS. it takes a month or two to get used to but then it helps so much. my period is very light and there is little pain. I do have some horrible migraines, fatigue, hr issues, nausea, dizziness and aches and pains the week before my period. I have intense bloating for one of the
  12. I take zanaflex. It is a muscle relaxant. I have taken it for about 5 years now and I really like it. I take it at night only though because it makes me sleepy and I never got used to that. I sometimes take small amounts of it when I have a headache though. I take Etodolac/Lodine which is like Mobic and I like it. I liked bextra more, but alas, that is no longer available. Mobic is apparently harsh on the stomach but very effective for arthritis pain and other sorts of inflammation. Just remember to take it with food and a lot of fluids. Leah
  13. Don't get too down. you might be one of the lucky majority who does see improvment or who gets better. The people who post on this site are mostly the ones who did not see improvement over a five-year period but a majority of people with our illness do not have it permanently. they do not usually post anymore. If you got this suddenly, you have a much higher chance of getting better. it will feel terrible for a while, but i want you to know that there is hope on the horizon for many of us. I have been ill for about 9 years now and I had symptoms earlier in my life. I probably have Lupus or Rhe
  14. Good Luck on the exam. I have an 8-10 page paper due tomorrow and I am only 2 pages through, oy. I find that I get shakey and very ill for every single paper, presentation and test and I try to ride the adrenaline through. I think it is a mixture of stress and pushing too hard to get all the studying/writing done. We feel very nervous that we won't even make the test too. I am a very laid back person, but I think that sub-consciously must get stressed. Also, I find that sitting to study for a long time is hard. I have to force myself to take good breaks. I try to do some studying lying down. I
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