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Everything posted by KiminOrlando

  1. Sorry you are having trouble. Your bloodwork is interesting. Did they test your ANA? Did they say it was negative or was it really mildly elevated? Do you have access to a Rheumatologist? With those kinds of inflammatory markers in your blood, you might benefit from seeing one. I have something called Undifferentiated Connective Tissue Disease. When my Rheumatologist treated the inflammatory condition, my dysautonomia got better. Just a thought.
  2. I went to the Medical University of South Carolina (MUSC) in Charleston. I highly recommend some university hospitals. University of Alabama at Birmingham (UAB) is high on my list right now. My POTS doctor at MUSC has stopped seeing patients so I am in the market for a new group. UAB is at the top of my list. I started in Rheumatology because I had a positive ANA. Because my doctor does research, not just sees patients, he was up on the latest stuff published. He saw that I needed more than Rheumatology and got me in with Pulmonology, Cardiology EP (POTS), Endocrine, Neurology, which led to gastro and a neurosurgeon. They have slowly peeled all of this back and found treatments for things, none of them curable. My life is much better now, but it started getting better when I went to a University hospital. I had previously been to a major diagnostic hospital/clinic in Florida and did not get much help. In fact, they denied me a drug that I needed because they thought POTS would be treated by exercise.
  3. Does EDS run in your family? If not, you would likely be looking at EDS type 3. The reason I ask is that EDS type 3 is not genetic, so a geneticist would be a waste of time and money. It is a clinical diagnosis, typically made by a Rheumatologist, I think. To echo @Pistol I also treated my underlying autoimmune disease which helped my POTS. I also used hydroxychloroquine and some other meds. It helped. Keep digging.
  4. Propofol messes me up for about two weeks. I pass out just walking from my bed to the bathroom in the master. It is not far. At the time I was too out of it to check if it was bradycardia or tachycardia triggering it.
  5. If it was me, I would reply back that I am concerned about the stroke risk. High/Normal BP, elevated norepinephrine, and wanting to give a med that further elevates these things are concerning. Are they expecting a paradoxical effect or is there some other mechanism that makes this drug work for you? You are not trying to raise your blood pressure. Your blood pressure is ok most of the time, is my understanding. Isn't it dangerous to keep it elevated 80% of the time just to bring it up the other 20%? Does stroke run in your family? It does in mine. Is this a test to see if your norepinephrine receptors are broken? If they aren't properly receiving the norepinephrine, then it won't matter how much you have in your system. If they aren't broken, they will receive the norepinephrine. He didn't specifically answer what happens if too much norepinephrine is released and received into your system. Does he know the answer? I don't, but your doctor should. Most people don't try a drug and see what happens when their concern is a stroke. It isn't an easy side effect to deal with like dizziness or weight gain. Maybe if you readdress your concerns in that light they would be more receptive to giving you specific answers? Or maybe not. If they can't or won't address your concerns over a stroke, then I would be looking for another doctor, but that is me. You are right to be concerned. Always follow your gut. You have the most to lose here.
  6. Yes, but does menopause limit it to only night? My mom wasn't limited to hot flashes at night and I have gotten menopause related hot flashes during the day. The odd squeezed stomach sensation didn't come with it though. I didn't know if this was a renin dump or acetylcholine or ?? Adrenaline doesn't seem to come with the weird stomach thing. I get buzzy with that. I wish I knew what it was. It is predictable. I probably will never know.
  7. This is weird. Even by our standards. Here goes. Every night after 11pm but before 1am, I get a strange feeling in my stomach. It is almost a queasy feeling, but more like someone puts their hand on it and squeezes. Within 60 seconds, I am covered in sweat. Every night. Is this some kind of chemical / hormone release? Is it related to my HyperPOTS? Does anyone get this? I can tell people that I am about to start sweating profusely and they are stunned when they see it.
  8. Yes, Northera raises norepinephrine levels, at least that was my understanding. My doctor took me off of Northera because my norepinephrine levels got too high. My impression of how this drug was received by cardiologists is that 'It is a cure for POTS.' That is all most understand. What kind of POTS? How does it work? What if you already have high levels of norepinephrine? Can your body get too much norepinephrine? What happens then? If you aren't comfortable taking this med, don't take it yet. Call the doctor back. Ask for a telemed appointment to discuss these kinds of things with them. If you don't believe they understand how it works and what kind of POTS you have, go get another opinion. You should feel comfortable advocating for yourself because nobody else will, although, I completely understand your hesitation. I don't know how to answer your question. If I was faced with the same thing, I would ask more questions. It may end up being exactly what you need, but these are important things to sort out. Also, when you get those answers, please let us know. I think there is still quite a bit of mystique surrounding this drug. Good luck.
  9. Lyme Disease can have similar symptoms as auto-immune disease. I'm glad you found answers and I hope the treatment works for you.
  10. SNF is Small Fiber Neuropathy. It doesn't sound like you were given that diagnosis.
  11. Domperidone is for gastroparesis and it helped me tremendously. It isn't FDA approved and needs to be compounded, but it changed everything for me.
  12. That is wonderful! Let me know how UAB is. I may need to change doctors as mine is getting ready to retire. Hope all goes well.
  13. My migraines ended up being from Mast Cell Activation Syndrome. Histamine blockers made it better including Low Dose Naltrexone (LDN). Nothing else helped with migraine headaches. Excedrin Migraine used to make them mildly better. Hope you find a doctor willing to help you. I also used breathing techniques to try to force my autonomic nervous system to relax.
  14. I get this and my ears. None of my doctors are concerned, not even my Oncologist. He administers my IV biologic for an autoimmune disease. I don't know what it is, but my doctor, who specializes in cancer, doesn't see it as a sign of cancer. Hope that helps a little.
  15. Hypo-POTS, at least the way I understood it, means that norepinephrine was either not released enough or it was released enough but your receptors were broken and not receiving the signal well. My norepinephrine levels were fine, but I had hypo-POTS at the time. They gave me meds to increase norepinephrine but the levels got too high. I still fainted. It was thought that my receptors were damaged. This was not something that they could test for. It was just a theory.
  16. I have Interstitial cystitis and was just diagnosed with Mast Cell Activation Syndrome. Turns out that MCAS causes Interstitial Cystitis. The meds for MCAS have made my IC much, much better. I started having IC symptoms several years before I had MCAS issues. It is possible IC could be a mild, early symptom, even if the IC itself isn't mild. Not sure if this would be true for anyone else, but wanted to pass this along.
  17. Yes. Are you talking about in your legs, ankles, feet? I was told it was from the blood pooling and it is from 'leaky veins'.
  18. Wait... craniocervical instability causes csf leaks and a runny nose? I have craniocervical instability and declined to have surgery. Nobody said anything about a csf leak.
  19. So very sorry. I have been there too. Mast cell Activation Syndrome causes migraines. They are VERY real and VERY bad. They get better with treatment for Mast Cell Activation Syndrome. I had to go to an Allergy and Immunologist to get help because my Neurologist basically said the same thing. He said, "You sound worse on paper than you really are." He didn't think POTS was a big deal or dysautonomia. I'm thinking he is a waste of money and I may be dropping him. You DO need to find a different doctor. Maybe try the Allergy and Immunologist and once you get a diagnosis, then go back and file a complaint? I don't think Neurologists know what mast cell is.
  20. Every time I try a compression garment, my toes, feet or legs go numb and ice cold. I have never found one that didn't cut off circulation. Also, how do you wear compression around your waist when you have gastroparesis? I start out comfortable in my clothes, but as soon as I eat or drink anything my stomach starts inflating and my clothes get too tight and uncomfortable. When I used to work, I would not drink or eat so that I could still wear my clothes by the end of the day.
  21. So when my nose runs like someone turned on a water faucet when I bend over, is that CSF or normal?
  22. I was told to quit my job and get married. It is just a thing bad doctors do instead of admitting that they don't know what is wrong with us. Keep searching.
  23. Yes, I take it early and drink a gatorade first thing. Then salt pills and water. Then another gatorade. I felt better within 48 hours.
  24. Mine said that I was flat and suffering from extreme fatigue and pain. Just walk in there and show them what is happening.
  25. An SSDI case worker is the one that represents the government. They gather paperwork and may even make recommendations about approval. I don't know how much authority they have, but they have input. They are not on your side. Nobody from the government is on your side.
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