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Everything posted by RecipeForDisaster

  1. I don't have a lot of answers, but I'm in the same boat without a diagnosis. I'm on midodrine, mestinon, and metoprolol for whatever it is and even IV fluids now. It's kind of surreal. My hand and foot veins are almost always bulging and I'm not on florinef. It's weird because my BP is low and blood volume seems to be low too. i can't stand unhelpful doctors. I could have been benefiting from fluids years ago, but I was told "you don't need them if you can drink" and other untrue things like that.
  2. My PCP said he would order fluids at home when I needed them but I would have to come in first (each time). That obviously wouldn't work! One of my more aggressive doctors was willing to order them and I just tried my first bag a week ago (I had never even had them in an office or hospital ). I knew they would help but was surprised at all of the positive effects... I suddenly felt like I could eat, slept better than I ever do, was able to walk a lot further, was not nauseous, etc. etc. I was genuinely happier and I am usually pretty happy anyway even though I'm sick. I am lucky I
  3. Delivery is coming this morning, thank goodness, because I am really in need... haven't slept in days as I seem to be getting a cold, feeling horrible. It's such a relief that I will have this on hand... $360 copay or no! The local company, although owned by a big national company, came through quickly. Don't bother with Walgreens specialty/Alliance Rx..l when I asked the supervisor if being on hold for over an hour every time I called was normally she said "unfortunately yes" who can deal with that?? And useless information if you are lucky enough to get a person.
  4. I use it when I need it, too. The jitters and cold chills are bothersome and sometimes I get chest pressure. I have been avoiding 5mg but I should try 2.5 to see if it helps.
  5. Well I sure would not recommend that company! After about 14 total hours on hold (yes really) over 8 days, it turns out... they DON'T DO HYDRATION?!? Is there some special reason why no one could tell me that last week?! I'm starting with a local company that seems quick and caring. I have to get my husband's nursing skills signed off by them and then we should be set.
  6. Thanks! I have not done hydration anywhere but at home. I was sort of surprised at how helpful it was, although by the next night it had mostly worn off. Definitely worth it. I have no port, just new peripheral IVs to be placed each time. I doubt I'll do it as often as 3x week PRN as ordered just because of logistics. After a week and literally about 10 hours on hold total, I managed to get a supervisor by being left on hold when the place CLOSED. She felt so bad and is helping me, saying the orders are fine and they just need to run a test claim today. We'll see, if it's this painfu
  7. I'm surprised this has been so difficult to set up... my insurance set me up with Walgreens specialty/AllianceRx. It's been a week and no communication unless I initiate it, and no progress. First they said they'd call the doctor for the order, and they didn't.... then I had the doctor call THEM and they still say they don't have it. I have a paper copy but they can't accept a fax or email from a patient, so I have to send it from a doctors office tomorrow. I have good insurance. Does anyone have good experiences to report with getting these supplies (normal saline) sent to them? Any tip
  8. I did a liter of normal saline over about 3.5 hours. The idea was 4 hours for the first time, but I hadn't had to urinate at all after 800mL was in so figured I could speed it up a little, and it was fine. I hardly peed any out all day which is weird... If i drink 500mL of even electrolyte solution I pee most of it out quickly. I suspect that's part of my problem... whatever I drink, even if it's isotonic or hypertonic, it goes right out. As I suspected, IV fluids stick around, even though I don't understand why. Next time, I'll warm the bag more (I was hot when it started so I didn't feel lik
  9. I know... it doesn't help that the flu is widespread too. Both agencies haven't had this as a factor...the retail pharmacy doesn't deal with this, and the specialty pharmacy is just slow starting me as a patient. Inde they do I may have a problem with the shortage. I have a liter bag, my first, running right now... it was given to me. So far so good! I was sweaty and nauseous early this morning before getting stuck and those are gone. Yay!
  10. Thanks. The follow up testing is still positive (I think still homogeneous) but the DNA testing he sent out hasn't come back yet. I don't know a lot about this rheumatology stuff but I would welcome more education. I get a lot of colds and weird fast moving cellulitis if I get a tick bite, so I am not too excited about suppressing my immune system. My neck, back, and shoulders are really my achy all the time, but I wouldn't say my joints really hurt unless I injure them. I fall so often that it is hard to tell. The doctor is a hematologist but he has special interest in immunology,
  11. The hematologist believes it is meaningful and pointing to lupus because it's always been negative before... and homogeneous now. Hopefully it is just a blip, although I can't say that I wouldn't welcome some answers...
  12. Thanks... i still don't have the fluids or supplies. My retail pharmacy is not too caring and if they couldn't get the stuff, they wouldn't have told the doctor ordering it. I know this could be very helpful and might give me informal confirmation that I have low blood volume. Plus, it's pretty safe. Does anyone get these supplies mail ordered in the US? I had trouble finding a source but am calling my insurance today. I'm looking forward to having this tool for those "on the floor and can't sit up" days, and also before trying to hike, to see how helpful it is. I don't use ERs
  13. I have a wonderful rechargeable heating pad. I will tape that onto the bag. Thankfully my veins are pretty good so far! i believe this doctor will order the fluids as often as I need them. That's good to know about running them slowly...
  14. So my hematologist just ordered fluids at home. My husband is a nurse and will put the IVs in, right now up to 3 times weekly. I haven't tried this before and am curious to see how much it helps. If anyone has any tips for starting this therapy, I would appreciate it. I don't expect to use them that often and want to keep my veins useful. I know I plan to tape a heat pack on the fluids for now, to warm them a little. My ANA is homogeneous at 1:160 which hasn't given me a diagnosis but which the hematologist says "means" lupus. It was always negative before. My IG2 is high which he
  15. I have those Beaus lines very badly on my toenails. One nail is breaking off at the line. I have a newly positive homogeneous ANA which is suspected to be lupus, but is just beginning to be worked up. I hope we can all find what we need....
  16. I haven't seen anyone who made a connection, but I have this as well a second genetic cause of increased clotting... and now a newly positive ANA although I understand it's not related to the anticoagulant.
  17. You sound so much like me. I don't have the results from my most recent TTT yet, but I suspect they aren't helpful. Pounding even at low heart rates is probably my most intolerable symptom too. I was up almost all night because of it last night. Metoprolol has helped but not enough. I hope we both find answers soon!
  18. As a side note, I have pretty bad asthma and it was still possible for me to try a specific beta blocker (there are a few) . I am doing fine on metoprolol, asthma-wise.
  19. All of my dysautonomia symptoms are much worse with any kind of cold or infection. It really doesn't take much to throw me off, and I get a lot of colds so it really sucks. I am allowed to take more metoprolol so I may try adding a halfway table to next time. My fast, pounding heart is usually my worst symptom no matter what my infection is like.
  20. I have a feeling that with my newly positive ANA I will have doctors wanting to draw a lot more blood. I'm starting with trying to make sure everyone has all of the results now that I am seeing 7-8 different doctors.... at least we don't need to run any tests more than once. Hopefully I'll only need a few tubes drawn most of the time, or maybe I can get some saline replacement afterwards?
  21. I absolutely never get thirsty, except once in a while if I'm very shocky (cold and gray on the floor time) but then I'm too nauseous to drink. In the past few months I have started to lose my hunger as well. I went more than a day without eating and just never felt the urge, nothing looked that appealing, not even my favorites. I didn't try a zofran because I wasn't really nauseous, just not hungry. My doctors don't seem to be interested because I haven't lost weight lately. I'm already fairly thin, and when I force myself to eat, it's fortified high calorie stuff to make up for missed meals.
  22. Has anyone tried this or, more importantly, bought a unit to use themselves? I can't see how it could be harmful, and I depend on my TENS device which is kind of a similar kind of thing. I'm intrigued! And sort of desperate. I saw one unit, that goes on the ear, on a British site for 599 pounds...
  23. This is one of my most distressing symptoms, also, and none of my doctors are too worried about it. If it happened to them, they would be! Metoprolol has helped but not removed this.... maybe 40 percent improvement and I sometimes wake at 2-3am from it anyway.
  24. I still kayak, ride horses, hike, etc. but I feel awful during and after, and sometimes end up lying on a trail somewhere for hours. Even stirring batter is too much for me... but I don't want to lose my fitness and I do enjoy being active.
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