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About KiminOrlando

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  1. I agree. The answer is no. My first cardiologist put me on a tilt table. I fainted. He told me to eat more salt, drink more water and exercise. This was considered diagnosed and treated. It didn't help at all. My chart had this resolved. So did my insurance company. Unfortunately, my body did not agree. It took 20 more years of struggling to break out of it. I advise to wait for someone who really knows what to do.
  2. Congratulations. Yes, you got very lucky that the expert understood what dysautonomia was, how it works and stuck to his guns that it was outside of his area of expertise. Getting stable finances and insurance is the first step in being able to rest and start recovering some of your life. It will not be quick. Give yourself time and grace.
  3. Be sure to mention that when you are at Mayo. It sounds like you need to see a Rheumatologist. Only a Rheumatologist can rule that stuff out. Bloodwork is only part of the story. I have an autoimmune disease and my bloodwork was negative for years. I was diagnosed with sero-negative Rheumatoid Arthritis. Two other Rheumatologist said I didn't have it. I found one to look at everything and make a clinical diagnosis. A couple of years later my bloodwork turned positive, but it was clear that I had needed the medication years earlier. Primary care physicians aren't equipped to make clinical diagn
  4. There is a link between dysautonomia and autoimmune diseases. Bloodwork doesn't necessarily mean that you are negative. The doctors should really biopsy those spots to see what it is. Psoriasis and Psoriatic Arthritis are both possible, and it sounds like you are on the right track by having someone at Mayo check things out. Are you having any kind of joint pain or inflammation or is it just the lesions?
  5. My Rheumatologist, Immunologist and Oncologist (Hematologist) all recommended the shot for me. They specifically recommended the Moderna shot for me. It is unfortunate that your doctors won't make a recommendation for you.
  6. My d-dimer is elevated too. They don't know why. They are watching it. It has been years.
  7. @KnellieRead through these and see if this helps.
  8. Do a search on 'mast cells' in this group. There is an excellent thread. There is a search feature at the top.
  9. I think it can cause a flare in Mixed Connective Tissue disease and Undifferentiated Connective Tissue disease. Depending on who you talk to, I have this. Sun messes me up.
  10. I think your family was out of line. You don't have to cover it. Illness and medical devices should not scare children. They just need to have it explained to them and they are generally ok. Adults set that tone. I have used a wheelchair off and on for 15 years. My family was ok with it. My mom is more horrified and unwilling to accept my weight gain. You didn't do anything wrong. Don't let them keep you from seeing family.
  11. @CallieAndToby22 You may be a very different story. You should definitely check with your doctor.
  12. I had one dose of Moderna and I was fine. I have Mixed Connective Tissue Disease and HPOTS. Oh and some kind of mast cell "issue".
  13. My nephew has this. He had to see a neurologist and then a neurosurgeon to remove the blockage. Evidently, they can escalate and cause permanent issues. Pain was part of my nephew's issues as well as headaches. Please call your GP and get in with them ASAP. If they do not refer you to a neurologist and then a neurosurgeon, please seek a second opinion. It is going to be ok, but you need to get this taken care of. I'm glad they found it.
  14. @CallieAndToby22Thanks. That is good to know.
  15. Because it was. That is really all I get from my doctor. It is frustrating. I think it was a blood test. I didn't do the 24 hr urine because I wasn't sure insurance would pay and I read it needs to stay refrigerated. I was supposed to do it through Quest. Quest does not refrigerate their samples because they say it is unnecessary. I decided my test would be invalid or give a false negative, so I didn't do it. It concerns me Quest doesn't do this test correctly. Xyzal is an OTC H1, so I am on an H1 and H2 in addition to Singulair and the Naltrexone. My doctor says it only comes in 50 mg t
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