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KiminOrlando

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  1. I had such a reaction to the second dose that I am dreading the 3rd dose. My doctor wants me to get the 3rd Moderna too.
  2. Until you can get prescription nausea meds, have you tried ginger ale, ginger tea, ginger snaps, candied ginger? Ginger helps me about half of the time. The nausea may be from gastroparesis, so you may need to see a gastroenterologist for a gastric emptying study. They found I had gastroparesis and put me on fabulous meds, but most places won't write for what I take because it isn't FDA approved. I hope they figure it out soon. It is a difficult and lengthy process to go through.
  3. I think you PCP is on to something. Ask them if they will write a script for a standing MRI with flexion. MRI lying down doesn't really show much. The other will show the Craniocervicle Instability if there is any. The Radiologist will read it and send the report to the PCP. From there you can see a neurosurgeon if needed. This is a common thing among people with dysautonomia. Good luck!
  4. @Pistol I'm dumbfounded that your doctor didn't run an ANA and full Rheumatology panel. Viruses are often the trigger for autoimmune diseases, or so they suspect.
  5. Hang in there. It sounds like the post viral stuff. I guess your ANA was negative? You can have a positive ANA but test negative for all autoimmune diseases and end up in medical purgatory. I hope you feel better soon. Keep us posted.
  6. I found this article and it seems helpful. https://www.mydisabilitylaw.com/medicinal-cannabis-and-social-security-disability-benefits/
  7. My disability is national. Social Security Disability is from the federal government so if they see in the notes I'm taking meds that in theory could land me in jail, I would think it might matter. I know SS Disability stops if you go to jail. Just because my state has legalized it doesn't mean it is legal according to the federal government. There has been speculation that Federal law enforcement could prosecute people in states where it is legal. To my knowledge, they haven't. I think Federal law enforcement has better things to do, but bureaucratic paper pushers look for reasons to deny coverage. I don't want to risk my health insurance and only income on something that might not even work. I wish they would just let me use Valium at night. I know employers in Florida still drug test for it. Some allow it with proof it is for medical purposes, but they do not have to. Federal government employees cannot test positive even if they have a MM card and it is legal in their state. This may be too much of a gamble for me.
  8. I'm looking at trying medical Marijuana. I think what I really need is Valium, but nobody will write a script for that. I'm looking for something to tamp down my autonomic nervous system at night. Stop sweating, the vibrating feeling, the wringing feeling in my stomach. I live in Florida and found a doctor that writes MM scripts. If I try this, what happens? Do I need to disclose to my other doctors? I'm more concerned about SS Disability and my corporate disability seeing it in my records. Is it a problem since it isn't legal federally?
  9. @CallieAndToby22 Glad you are getting help. My dysautonomia doctor retired and I need a new one. I would like to try UAB. Who did you use? Did you just call and make an appointment?
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
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