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Everything posted by KiminOrlando

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Meaning what? Elevated proteins? Need more info.
  7. 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.
  8. I have had to stop my meds for Rheumatoid-arthritis and Lupus and now I am back to fainting. I had to sit while washing my hair again, then go lie on the bed in a towel for 20 minutes before I could even get dressed. Anybody else with an autoimmune disease notice a positive correlation between how you do with your autoimmune meds and dysautonomia? I'm hoping to start a new biologic soon, but this stinks. I have had it good for a few years.
  9. Several of my local labs told me that once the blood left my body, it was no longer mine. It was legally their property and I couldn't have it. I'm not kidding. Scary to think what they could then do with their legal property.
  10. ANA negative or ANA mildly elevated and inconclusive so we are calling it negative? This is what happened to me. My bet is that you are in that nebulous 'inconclusive' range that gives you symptoms but doesn't give you a diagnosis. I do get hand problems like that. It is a combination of Reynaud's Phenomenon and Undifferentiated Connective Tissue disease. They vacillate between rheumatoid-arthritis and lupus being dominant. My blood has been positive for both. My ANA was initially inconclusive. It may be a waiting game. I would keep an eye on the Rheumatology bloodwork.
  11. I get it too. My cardio EP, didn't have an answer either. In some ways it feels like buzzing and sometimes it feels like I am sitting in a diesel truck.
  12. Has anybody tried any of these Barre classes or Fluidity or any similar exercise classes/videos? I was thinking it might be good because they focus on total body, but a lot of leg work with little to no cardio. When I was younger I spent hours a week in dance classes, which I think slowed down this disease, but when I stopped, my health took a dive. I know I couldn't do even a quarter of an actual class, so I was really looking at the home system, but it isn't cheap. I figure I could pace myself and tailor it to my limitations.
  13. I believe this is spot on. My family didn't understand I was on immunosuppressants drugs and monitoring my white count. They didn't understand I was almost hospitalized because it got too low and I was staying with them during a flu outbreak so bad that they closed the schools. I was asking them not to come around me. I was staying with my parents and asked them not to go out in public unless ABSOLUTELY necessary, and that I couldn't be around my nephews because their school had been impacted and they couldn't keep the toddler's hands out of everyone's food. I was treated as being controlling and selfish. I couldn't get home fast enough. Now that we have someone with cancer in my extended family, everyone is cognizant of coming around them with even a cold. I guess it is easier to understand cancer than an autoimmune disease. At my worst level of pain and fatigue I could only handle the kids in short doses. I can do more now, but my parents are older and dealing with more aches and fatigue. Now they are the ones that need a break.
  14. I finally just told people that not passing out and feeling terrible/not being able to get out of bed for the rest of the day and possibly the next was more important to me than their opinion. It sounds rude, but so was what they were doing to me. When I showed them I was going to put my well-being over their perception of me, things changed. Maybe they still think that, but they don't say it to me any more. Learning to say no and not worry about it is a big part of this. I say no so that I can say yes to more. You can only control what you do. I have learned not to take on guilt or responsibility for other people's actions or thoughts. It has been liberating. I realize this approach isn't for everyone.
  15. You're right. The Chiari is what got me in his office, but when he listened to me and looked at the supine images, he sent me for the standing MRI with flexion. The local radiologist said they were inconclusive, but he read them and said he saw CCI and thought he could fuse only C2 & 3, but said he only goes in once and if he thought I needed more he would do it then or he wouldn't do the surgery. At that point it became a risk of not being able to drive. I'm not married and no real public transportation where I live. Not being able to drive would be catastrophic to my quality of life. Also, I have an autoimmune component to this little drama, so it was not clear that it would significantly help my situation. They still think mine is more autoimmune driven, possibly EDS III. I faint for several days after any anesthesia, and PT would start the next day. I just envisioned all kinds of problems since he isn't a dysautonomia doctor and lacks that understanding.
  16. For me, I have a slight Chiari, but they decided it wasn't impacting CSF and wasn't worth fixing. I also have the instability that the Neurosurgeon thought was worth fixing. He was planning to go in from the back to do the fusion because he believes it is a better result than going in from the front. I would have had the zipper scar, but my hair would cover it, so it wasn't a big deal. My neuro is Dr. Sunil Patel out of the Medical University of South Carolina. I think he publishes on PubMed if you want to read his stuff. He supposedly specializes in this.
  17. Let me know how that goes. I still stand by my Vandy recommendation. It would be nice to have someone close.
  18. No. I was given a regular neck collar that made things worse because it was too tall and kept my head in a position that put pressure on my brain stem. My muscles started getting weaker and I realized it was a bad thing to wear it.
  19. Really? Your ANA was normal? I have known people like this who have mildly elevated ANA, but not clinically considered elevated, and no spatter pattern, so they called it 'normal' when it was really Undifferentiated Connective Tissue Disease. What you are describing sounds autoimmune to me. Hang in there. It took me 10 years and 3 Rheumatologist to get a diagnosis and my diagnosis is still evolving.
  20. I was given this option and declined surgery for this reason. I can still drive but would lose it with surgery. There are people on here that had surgery with no relief of symptoms. Recovery/rehab was brutal. I used all this to decide that it probably wasn't a good risk/reward situation for me.
  21. What are you looking for? A friend of mine had Medicare Advantage and was able to get someone to help her with a bath once a week. She was 84. Other than that, nothing.
  22. What is the name of the doctor at the POTS clinic at Mayo in Jax?
  23. I am the opposite. I can't stop drinking fluids.
  24. I was approved on a physical ailment but still had to take a psychological exam. I think it is standard. I think a good question to ask is who got approved on the first attempt with no appeals. I didn't.
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