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Everything posted by KiminOrlando

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. Let me know how that goes. I still stand by my Vandy recommendation. It would be nice to have someone close.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. What is the name of the doctor at the POTS clinic at Mayo in Jax?
  16. I am the opposite. I can't stop drinking fluids.
  17. 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.
  18. GET AN ATTORNEY. I promise you the evaluating doctor will know nothing to very little about your disease. An attorney is the best investment. I wasn't put through the examination but did have to go to court, almost. I won in court with a Summary Judgment without a full hearing. I didn't have to go. My attorney did everything from soup to nuts.
  19. I was the same way. Knowing how you feel and having someone with authority declare you irredeemably ill are two very different things. It was a hard pill to swallow. I am helping a friend look for a job and I still get excited seeing jobs I could apply for. It is sad knowing that I couldn't do it.
  20. I have Rheumatoid-arthritis so I can't use my arms to do it more than a few feet. I have to be pushed. I'm in the U.S. and my insurance company paid for mine. There are places around here that sell used wheelchairs that are perfectly good if you have to buy your own. Maybe there are some around you. It would be a good idea for the first one just to see how you use it and how often. Then decide if you want to invest more money and what features work best for you if you decide to buy a new one.
  21. I use a manual wheelchair too when out like that. I wish I had a motorized scooter but insurance won't pay and I can't afford one.
  22. I don't know. My a.m. cortisol is 4, so I couldn't tell you. I always wondered what it would be if they took it at midnight when I can't sleep.
  23. The rash is everywhere. I went to my pcp and they put me on steroids. It got better, but the steroid pack ends today and I am already itching again. She referred me to an Allergy and Immunology doc, but their first appointment is September 3rd. My best guess is that I am allergic to my IV biologic the Oncologist gives me for my Rheumatoid Arthritis. I see the Rheumatologist who prescribed it next week. This is topic #1 on my list for him. I think I am going to call the Oncologist today and see if they believe it is a reaction since they administer the med. They may have seen this in other people. They still want me to see the Immunologist to rule out mast cell type stuff.
  24. Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely.
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