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Everything posted by KiminOrlando

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely.
  8. I have had an itchy rash since Christmas. It gets better with prednisone, then I stop the med and it comes back. I can't figure out what is happening. It flared up massively yesterday. NOTHING changed. I literally only ate leftovers and iced tea from the same container. No new soaps, meds, fragrances, nothing. I'm starting to wonder what Mast Cell Activation Syndrome is like and how you can tell if you have it. I have an autoimmune disease so I already know my immune system is whacky. Any thoughts or advice? I'm losing my mind and I have comandeeered a spaghetti spoon with all the plastic fingers as my new back scratcher.
  9. My heartburn was from gastroparesis. I got meds for that and my heartburn became manageable with omeprazole. Good chance you have some percentage of gastroparesis and until that is considered, the acid reflux will remain. I used to get acid reflux from drinking water too. What a miserable feeling...
  10. Ok. This is a stupid question and one I don't fully understand how to ask and what I am saying, so I hope someone smarter than me reads this and can fill in the gaps. I had a massive allergic reaction to getting my hair dyed yesterday. Now I am taking the max dose of Benadryl. I'm so jumpy I can't sit still, yet I'm so tired I don't want to move. My body feels so nervous. I'm hyperPOTS, but now it feels like everything just went beserk. This stuff is supposed to make you sleep. So I did some research and found this happens to people with a defect in their CYP2D6 gene. It causes a problem with an enzyme that the liver makes or something and it interferes with converting to dopamine. Do any of you have trouble with Benadryl? Do you know if there is any link or study about this gene and POTS? I know I have a problem with dopamine. I know Northera is droxy dopa. That converts to dopamine, right? Is there some link between this gene and POTS? Maybe dopamine plays a bigger part in running our bodies than I realized. No wonder I feel bad.
  11. I have vision issues randomly. I am told it is neurological. Some of it is an ocular migraine. Rest makes mine better. Computer screens make it worse as does stress and fatigue.
  12. They haven't given me anything. I am going to talk about this at my next doctor visit. I would probably only take it at night because that is my worst time unless something out of the ordinary happens during the day. I purposely lead a low-stimulus lifestyle. Anything else is exhausting.
  13. How do you get prescribed diazepam? They treat it like morphine down here. You can't have it. At least, I can't get it. I have had to cxl MRIs because they wouldn't let me have one. I am hyperpots and all the noise and closeness of an MRI sets me off.
  14. Florinef also causes low potassium. Not sure if you are taking it or not. My doctor put me on prescription potassium supplements and I have been able to maintain a steady level now.
  15. I really think you need to get referred to Vandy. Good chance your IC is from dysautonomia or at least, it is all related and the rest of it is disease progression. I know you said no more travel, but Florida offers no good options, imo.
  16. I got the implant in my arm so the hormones stayed consistent. It helped TREMENDOUSLY and kept me working a few more years. I don't know if you have that option. I would try the pill first to see how it goes, but with no off week.
  17. Could the calf muscle have been small fiber neuropathy? Could the chest be costochondritis? Look them up and see what you think. Any autoimmune issues? Sorry this is happening. We never know what is real or not.
  18. I go to MUSC in Charleston. Unfortunately my POTS doctor is no longer seeing patients and is in the process of hiring a new doc. He is going in to research and will be overseeing their new autonomic clinic. I don't think they are taking new patients at this time. I see him for the last time next month and will hopefully get an update with better news.
  19. They put me on Topomax because it had an off lable use for this. It isn't great, but I can tell when I don't take it. You might ask your doctor to research this. The med is normally used for seizures, but I don't have seizures. Just a thought.
  20. I think it is progression of the disease. I started this about 2 years ago. It was explained to me that my 'master control' is broken. If you figure out more, let us know.
  21. Did you see your bloodwork? I think elevated D-dimer is a symptom of blood clots. I was in the ER one time and my D-dimer was elevated and they did a ton of imagining because my O2 was a little low. They didn't find anything. I hope they find out what is happening with you and that you don't have to be on blood thinners. Please keep us posted.
  22. There are very few GOOD Rheumatologist. Even fewer of those who can understand how dysautonomia mixes with autoimmune. I drive 6 1/2 hours to see mine 2x a year at an out of state University research hospital. I had to change PCPs to get there. I also had to ignore the advice and diagnosis in multiple cases. Glad I did.
  23. I said the same thing until one of my drugs was $50,000 a year. Hopefully you can get in on that grant. Let us know if this works.
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