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Everything posted by RecipeForDisaster

  1. I exercise often, but this is greatly beneficial when I'm too weak or otherwise in bed anyway. Exercise does not raise my BP, but this does.
  2. One of my doctors recommended this in desperation for something to increase my BP. I didn't think it'd help much, but I got a Circuflow 5150 and I definitely feel better when it's running, and maybe some time after. It increases my BP about 10 points, just by inflating and squeezing blood up my leg. Mine only came with one leg sleeve and they are quite expensive, so I am on the lookout for a deal on a second one. It comes halfway up my thigh. For now, I'm doing an hour on each leg while I read before bed. It's tough to do much of anything while it's running, but it feels good.
  3. I'm excited that I have an appt with Dr. Systrom in April. I've been on Mestinon 60mg TID for years without side effects, and with minor to moderate beneficial benefits.
  4. She's in Tarrytown, NY... I've been referred to her for potential autoimmune issues. I may be able to have phone visits with her but I'm willing to go to her if needed... it's only a few hours away . I was happy to find this page on her! https://www.ehlers-danlos.com/anne-maitland/
  5. Ha, yup, me too, I thought that it was my husband who was abnormal! Why do you need water? Why do you need a bathroom?
  6. I am never thirsty and don't enjoy drinking. I do it to be good. It doesn't matter how hot it is or that I eat 15gm sodium daily... I never understood why people craved liquids. No one seems interested in this at all.
  7. My feeling is that the stress and discomfort of the test increased my baseline BP (clearly documented - about 30 points higher diastolic than at home) so I don't come up positive when I'm there. I get blacked out vision and extreme lightheartedness when I stand, but not during a TTT. My BP doesn't dip low enough. I wish I could document anything but I'm very different in my natural environment
  8. My beta blocker doesn't cover the increased HR I get with any infection. I get a big increase in my resting and exertional HR despite it.
  9. Thanks. My dream is to be able to put other people inside my body for a day so THEY can feel what it's like, and try to figure it out, and see how difficult it is to "just live with it".
  10. They might if they seemed to have any interest in anything that's wrong with me! I don't know what it will take to make them care, unfortunately. Maybe if I lose another 5 lbs. They definitely believe all of my issues but I think they feel emasculated/frustrated by not being able to find the cause, so they tell me I need to adjust and live with everything . Obviously in many cases that isn't healthy. BP in the low 70s as a new baseline, passing out, not eating for days unless I force myself, plus much more... come on, how does one get used to that?
  11. I haven't had an appetite since March no matter how long I go without eating. I'm trying to tempt myself and sometimes force myself to keep taking in calories. Sometimes the smell of something good like pizza or Chinese food will help me to be interested in food, even without hunger. I have a lot of nausea too but I can take zofran to help with that. I try to make myself take in ice cream, cheese, nuts, etc. as concentrated sources of nutrition and calories, and I supplement with homemade shakes, too. I'm a huge foodie, though, so it's weird and disappointing to not want to eat. I usually feel worse after eating, even if it isn't much. I've lost 13 lbs and was thin to begin with... the doctors I've seen recently aren't concerned but everyone else is! I've never been this light as an adult. I think it's just secondary to my low BP and not doing well. My body doesn't seem to want the burden of digestion on top of fighting to keep sort of functioning!
  12. I don't even have anxiety or a label thereof, but I swear I could go in with a spear through my head, or a burst appendix, and would be told "it's perfectly normal ", "you just have to adjust to life this way", and "it won't last forever". I lost 13 lbs unintentionally, down to the lowest weight I've ever been, and was told "it would be normal for you to be depressed ". Oh, that's the MOST likely reason, huh? Not because I feel too sick to eat and worse after? Btw, if I were depressed I'd eat everything in sight, that's more my style. How does one get doctors who actually CARE? No diagnosis here either, just annoying stuff like "idiopathic hypotension", "positional dizziness"...
  13. Yep, I can be flushed and have an increased white count and tachycardia , but they won't consider that a fever.
  14. Absolutely. My temp is 97.2 or even lower at baseline, and I feel extremely feverish and flushed at 99. But it's always dismissed as "normal" when I'm sick. Then how is 97.2 normal?
  15. I love the fact that I don't have a smartphone. I actually only have an emergency bar phone - it's for calling for a tow truck or medical help only, I don't use it. I am free and disconnected...
  16. My CMP is always fine, too... potassium and sodium actually on the low side despite supplementation. I'd love to at least get the first liter LR and the rest NS... not like I want to run 6L LR weekly or anything. DDAVP isn't super common for this sort of thing... I know for me it was one of the last chance drugs, and most of my docs didn't want to prescribe it. No alternative was available - I can't ruin my veins nor can I always lug an IV pole around for 12 hours, and sometimes I'm too shocky to even get an IV.
  17. I'm hoping to try LR, too, but I have enough trouble getting saline myself. The doctor who writes my Rx for saline doesn't want to try LR for some reason and I'm grateful to have ANYthing, so.... I use DDAVP as a last ditch BP increaser because I am very low and not much helps it. I use it as little as possible and take 15gm salt daily. I haven't had my urine volume measured, but my sodium excretion was normal. I don't think I urinate more than I drink. I'm going to see a nephrologist next. Endocrinology was not interested. If not for saline and DDAVP, I'd be stuck on the floor at least one day a week these days.
  18. Right, I'm in the cardiologist's office right now. Much better to see my own physicians and get testing ordered. Lots of doctors don't understand my clotting issues, let alone the other stuff. I can't believe the other doctors left me hanging all this time. I was at a major hospital on Thursday! My oxygen levels are fine but that doesn't rule anything else. I'm taking a ton of little shallow breaths, which must be keeping it up. The X ray was just to rule out other stuff. I'm getting contrast with my angiography today. They didn't think to run a D dimer on Thursday with my other labs?!
  19. I've been having awful pleuritic chest pain that radiates (can be worse than the original pain - neck, shoulder, arm)for ten days now. I do have clotting disorders... can only take 1/4 breath but it hurts to breathe out, too. One doctor totally ignored it (rheumatologist) and the other I saw ordered plain X rays and a few labs. They didn't show anything except that my sed rate is 15 points more than it ever has been. Those results don't rule out much of anything except pneumonia. The PA I saw was supposed to ask my PCP about other labs, and they never got back to me or checked in. The sed rate is only on the high end of the range now, not over. My heartbeat actually hurts! Leaning, yawning, etc. have made me literally cry... so painful. A few nights I didn't sleep for one minute. Tylenol hasn't helped, nor has heat, but I can't handle much BP wise. Lidocaine patches did nothing but TENs helped where I am allowed to put it on (not neck or chest which is the worst of it). I'm allergic to NSAIDs The pain is bumping my BP up, and haven't seen it below 80 systolic- yay? I was supposed to see one of my cardiologists today anyway... my hematologist ordered a CT/pulmonary angiography after that is over. I'm a bit afraid of the contrast and really hope they'll let me use the IV for my own fluids after. I can't eat or drink for 4 hours prior anyway. I'm praying I won't have to be admitted for whatever this is. I'm afraid of getting substandard care... because I have been as an outpatient, completely falling through the cracks. I've done Lovenox shots before... I also hope I don't need lifelong anticoagulation when I am constantly falling and getting hurt! I'm covered in big bruises even though it takes a lot for me to bruise. I would really appreciate your thoughts being with me today! I was already so sick before this. I sure hope they don't expect me to live with this discomfort even if it's not something bad - it's torture!
  20. I really want to avoid joining even for that long, unfortunately. I am totally amazed that about 12 physicians I see in 3 states don't have a single -recommended- rheumatologist. It makes me think that we might not have any decent ones.... wouldn't one of them know one??
  21. Federal Blue Cross. The problem isn't my insurance but getting the PCP to send referrals out. They have done so literally about 12 times now, in a few years, and the specialists always require that. Plus, I've asked each doctor and all of my friends and family, and absolutely no one can recommend a rheumatologist!! There must be a lot of bad ones ... I keep hearing "I know some but none I would refer you to". If I heard of one that was promising, I'd bug my PCP, but I'm not going to take another shot in the dark. It stinks!!
  22. I'm not on Facebook. I found my doctors didn't even want to send me to a rheumatologist to begin with, so I don't think I have a shot at seeing another one anyway. It's ridiculous. I mean, my ANA turned positive not too long ago and has stayed there... I had new (4 days) chest wall pain when I saw him and he wasn't interested at all. My sed rate, while still within normal range, is the highest it's ever been. I can see if my hematologist will test me for that gene. I'm very let down about all of this. Not that I want AI, but it seems I do have it, and I can't get anyone to care or look into it. Now I have this awful chest (front left) pain that limits me to 1/4 breath, going on a week, and no one seems very worried about it. I got X rays but not the expiratory films you need to rule out free air, and some labs... that's it.
  23. He wouldn't really even talk to me about anything. I don't know what his views are. I could have something like AS and then I wouldn't even need a seronegative diagnosis. I don't know if I have enough signs of anything autoimmune, but he did not touch me except to listen to my lungs in two whopping places. I doubt I'll be able to be referred to another one. I really hoped for someone who would actually assist me!
  24. Unfortunately, this was a total and complete letdown and waste of time. The doctor was uninterested and said this was a dead end as I don't have Lupus or RA (DUH thanks). The trip in total took over 7 hours, I waited months to get the appt and spent all those months preparing... sending labs, writing up a summary, etc. He spent maybe 5 minutes with me and got interrupted twice by his pager or phone, and once by someone WALKING INTO THE ROOM to interrupt me in the middle of a sentence (they wanted to know where the doctor was, what??)! I want my copay back!! I do wonder about AS... but I will not be getting any help from this guy!
  25. Believe me, I'll be mentioning it, it's quite painful and distracting! I don't want AS but if something helps him diagnose me, I'll take it.
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