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KiminOrlando

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About KiminOrlando

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    Female
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    Orlando

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  1. I have many of these too including breaking ribs by coughing. My cardiologist says I almost meet the criteria for EDS, but not quite. He also told me IF I had EDS, it would be type 3 which is not detected by a geneticist. He isn't pursuing it. He said they would only be able to treat the symptoms anyway, so it really didn't matter, but I think it does. My insurance company cares because diagnoses are used to determine what is covered. Does your doctor think you have one of the EDS types seen on genetic testing or the other kind? EDS Type 3 can also run in families, I think. I hate to say it, but you sound like you fall in that nebulous category that many of us fall into and are still waiting for answers. I hope you are the exception and get some.
  2. A little off topic, but are they willing to try Domperidone for her gastroparesis? It is not FDA approved and would have to be compounded, but it helps me tremendously. It would only treat symptoms until they figure something else out. It sounds like you have a good doctor. Please keep us posted.
  3. What are your standing norepinephrine levels (bloodwork)? They may not have run this test. If not, ask why. It will tell you what they are focusing on. This is some of the bloodwork they do on the TTT. You can also do it by simply standing without moving for 10 minutes. If you pass out, it invalidates the results. If your norepinephrine is low, ask if there is something that they can do to increase it.
  4. I also have an autoimmune disease so that in combination with dysautonomia and Hashimoto's thyroiditis is what did it. I just had to requalify with a full and complete re-evaluation process. It was an 8 month process and I was slated to see a Social Security doctor for an examination.
  5. My doc does this every visit. Poor man's TTT. Wants to know how your BP and HR respond.
  6. Hey, @Derek1987. We have the same job! Tedious, isn't it? And I have yet to get paid. Where is HR? I would like to complain.
  7. I had to completely give up working. What else can you do skill wise and medically? I can see how it would be dangerous to continue welding.
  8. I have night terrors. I actually dream that I fall asleep in the bed and room where I actually am, wearing what I am wearing and am terrorized by things going on around me. I wake up screaming, but can't tell if I am awake because it is all exactly the same as the dream except I don't know if there is an intruder in the house. It has been happening for decades. Even when I stay in a hotel, the dream is about the hotel room. It is amazing the detail I don't even know I can remember. If you ask me those details when I am awake, I wouldn't remember them.
  9. When I was the kind of tired you are talking about, I had untreated pernicious anemia. Not sure that is what is happening with you, but nobody thought to check with me.
  10. That is great news! Let us know how the new doctor is. We NEED some good ones in Florida. Hopefully this new treatment will work and get fast tracked with the FDA.
  11. I didn't have great results at Mayo in Jax either. I'm not aware Shands is equipped for people like us. I heard that UAB in Birmingham, Alabama has a POTS clinic, but often POTS Clinics do other dysautonomia stuff. Have you considered trying them? I live in Orlando and my docs bypassed Shands. I would certainly like to know if you get good results at Shands though. Still waiting to find out who the new doctor is going to be at MUSC's POTS Clinic in Charleston, SC. I don't think they have hired yet. Mayo declined to put me on florinef. My subsequent doctors were stunned. I don't know their rationale other than he was concerned about my weight. I think Mayo Jax only has one guy that is good with this stuff. He is a neurologist and I can't think of his name. Brain fog is real...
  12. Is there any way you can go on short term disability until you can sort this out and get in a better place? I know what you mean. I lost a job during this phase of my life. Hang in there. It gets better.
  13. Please keep us posted. I will be keeping you in my thoughts and prayers.
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