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About KiminOrlando

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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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