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KiminOrlando

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Everything posted by KiminOrlando

  1. I have had a headache and nausea/vomiting for 3 days. Not all that uncommon for me, but the headache doesn't usually last this long. I just checked my bp and it is elevated. Doctor is closed for the weekend. 128/100. I'm thinking of stopping my salt pills. I take florinef but don't think I should stop or taper it. Anybody had low BP for a long time change to high BP? It isn't high enough to go to the ER, is it? My head is hurting bad enough that I have thought about it but I don't know what they could do for me.
  2. Gastroparesis causes nausea. Gastroparesis often also causes pernicious anemia because of absorption issues. Pernicious anemia will make you sleep 22 hours a day and spend the other 2 in a fog. Have they checked your B12 in your blood? The worst time in my life was before I was treated for both of those conditions. I only have vague memories of those years.
  3. Yes. I started taking melatonin and it helped at night. Oddly, it doesn't make me tired. Thinking of trying it during the day too.
  4. My doctor had never seen anything like it. I had a doppler study to check blood flow, but it was fine. Of course, it was done laying down.
  5. I am also a slow healer. I had surgery on my ankle and the incision pulled open, maybe because of swelling from blood pooling. The incision bruised. It has been 4 years and still looks bruised. I think it has something to do with POTS, but I don't know what it is. I was supposed to do the other ankle, but that surgeon, a podiatrist, declined to do it.
  6. @Jwarrior77 At this time we have no further information. The doctor stopped that IV Biologic because I had a bad reaction. We are just now getting ready to start another RA med. My dysautonomia is worse when I am off my autoimmune meds. Nobody has retested my Free Light Chains.
  7. I have gastroparesis but it took years before they would do the test. I told them I would throw up when I bent over to pick something up. I would eat dinner, then throw it up the next morning. It isn't supposed to still be there that long. I am on medication for it and it changed my life. Before meds, I wouldn't leave the house because I never knew when it would happen. I went to 4 gastroenterologists before I found one to take me seriously.
  8. I think in women it can be difficult to see everything because of breast tissue. Not sure if that is an issue here.
  9. I sway. I don't know why and nobody seems worried about it. I wish it would stop.
  10. I agree with Lily. I get a bone density scan every two years to make sure nothing bad is going on. They monitor me, but let me stay on the med. If things start to go wrong with my bones, then they would reassess.
  11. I've been on florinef for 15 years. I think some doctors overreact. My bone density scans are within range for my age group... the low side of normal. Curious about other people. I'm on another med for something else that people panic about, but my doctors said it was reformulated and it isn't an issue anymore. This seems to be common.
  12. I don't have it that bad, but I took Melatonin to help me sleep. Didn't help me sleep but it helped the shaky, sweaty, feeling like my whole body is vibrating and I'm going to jump out of my skin but I'm too exhausted to deal with it all feeling. Dumb luck it seems to help and I don't know how long it will last. Hope you find something.
  13. Yes. It turned out in addition to all this mess, I had pernicious anemia. It would take all of my energy to walk from the couch to the kitchen table (20 ft). After that I just wanted to collapse and sleep instead of eat. It was a very bad time in my life. Hopefully they do full blood counts and notice what is going on. I went for years with untreated pernicious anemia even though it was clearly in my bloodwork. Low blood pressure is also very exhausting as is tachycardia. When my resting HR was in the 120s, I was too tired to do anything. Keep talking to your doctors. It can get better.
  14. Boredom? You can call my insurance company and try to get them to pay my claims, then call the doctor to get them to update the claim. Then call the pharmacy to see if they have been able to get my drug yet. I'm flipping exhausted. I'm joking. That isn't a criticism.
  15. Good for you for advocating for yourself. Hope you find a better fit.
  16. I have tried Melatonin the last two nights. I'm hyperPOTS and normally wake up with my body vibrating and I randomly sweat all night. Both nights none of that happened. I woke up with my body still and relaxed. It was so calm and peaceful like I have never experienced. Has this happened to anyone else? Is there any medical reason this would happen? It doesn't make sense to me.
  17. Yes, but I see your concern if your PCP wants to chalk your POTS up to anxiety, then you want him out of the loop, unfortunately. I would not sign it and talk to your therapist. Tell them you are concerned it will impact treatment of your medical condition because uninformed doctors like to think of it as a psychological condition instead of medical. Tell him you understand that normally people do coordinate with the PCP. Maybe he will research dysautonomia. Maybe being honest will make him an ally.
  18. They can't fix you. That is what I was told. They can only treat the symptoms. They treat them one at a time by trial and error. Vandy was a great experience for me. I hope you get answers and help. Living like this is very frustrating. I too start sweating when it isn't hot. Wish it would stop.
  19. I feel like I was being discriminated against because of my disability. It was part of a larger agreement and I was willing to sign it if they would strike that section. Very frustrating, but, if he wasn't able to understand my limitations, he probably wasn't the doctor for me. Treating me is more of a collaboration of trial and error. It also had a clause that I would self pay if insurance didn't pay within 60 days. I can't make Medicare pay if they are waiting for the doctor to correct coding and refile. When doctors get their money, they don't help me get mine back. I certainly can't change coding. It was just a bad fit.
  20. So, my new doctor wanted me to sign a form saying that I will give them 24 hour notice to cancel an appointment or pay $50. The problem is that my body doesn't give ME 24 hour notice when it decides not to cooperate. All of my other doctors waive this requirement because they know my diagnosis. This guy wouldn't and refused to see me if I didn't sign. I explained it was a medical disability and I was adjudicated through the court as being disabled. He still wouldn't. I ended up leaving. Do you guys have this problem? I pay enough for medical help I actually get. I can't afford to pay medical bills for help I don't get.
  21. If your face is drooping, you should probably go to the doctor or at least call them. They need to rule out stroke. This happened to my mom and the walk in clinic saw her when we came through the door and immediately sent us to the ER. Luckily, it was just Bells Palsy.
  22. Out of curiosity are people getting insurance like Medicare to pay for treatment based off of results from Celltrend tests? My doc told me it is an unproven test and insurance won't take notice of it. I asked my Rheumatologist though, not my dysautonomia specialist. Maybe that matters.
  23. Meaning what? Elevated proteins? Need more info.
  24. Yes, you have to lose the appeal too before going to a hearing. Sorry this happened. Glad you got an attorney. I had to win in court and it took 4 1/2 years. I also have multiple autoimmune diseases.
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