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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Celltrend?No. Mine is autoimmune - found and are the antibodies
I will also say that I have a friend who developed several small CSF leaks. They did not have the correct equipment here in Seattle and she was incorrectly diagnosed wiyh brain cancer. She eventually went to Mayo in Minnesota and they had the correct imaging equipment and were able to perform surgery to correct the problem and has improved dramatically.
It led to my getting IVIG and taking pyridostigmine and a beta blocker which have all helped.
@Gingergrrl I agree and I also think there are multiple causes of POTS. Unfortunately, this makes it incredibly hard to find root cause for each suffering patient. It's usually up to the very sick patient to advocate for a detailed work up on all these different and complex root cause possibilities.
Autoimmune. Unfortunately, Dr Vernino declined my referral and did not give a reason.
The hot topic at the recent dysautonomia conferences has been autoimmunity.
I also had this set of tests done by a dysautonomia specialist, a neurologist. They are designed to figure out what is not working properly:
https://www.neuroassociates.us/autonomic-test-preparations.html
I will also say that I have a friend who developed several small CSF leaks. They did not have the correct equipment here in Seattle and she was incorrectly diagnosed wiyh brain cancer.
I also had the Mayo DYS1 testing done twice. N-Type Calcium Channel Ab came back slightly positive. It was designed by Dr. Steven Vernino. Unfortunately, Vernino declined my referral without explanation.
It sounds like Mayo, Cedars-Sinai, Stanford, and Duke are the the top places for CFS leak work-up.
Florinef -
Pyridostimgmine
Midodrine - Currently, testing 2.5 mg TID and it has actually lowered my BP by 10 points down to 100/60. This makes absolutely no sense to me. I thought Midodrine was supposed to increase blood pressure. I am usually 110/70 to 120/80 with florinef.
Propranolol
IVIG
That is the only one I failed, too. Atvtge time, I thought it might not be good enough, but the dysautonomia specialist took it quote seriously and seemed satisfied he's figured out what was going on. He commented that I had hypoperfusion in my brain causing me to pass out on the tilt test. And the meds he has prescribed have dramatically helped.I only failed the heads up tilt heart rate with 60 to 125 bpm increase
This has made a huge difference in my functioning. I'd guess that your response may differ due to the combination of antibodies you have. In my case, I seem to need an increase in acetylcholine, which is what it does. Maybe you don't.Pyridostimgmine - No response. Nothing positive and nothing negative
I have been on several medications that affect blood pressure, including ACE inhibitors, ARBs, carvedilol, carbidopa, and toprol XL. Propranolol helped for awhile, but it stopped working. Some raised or lowered BP and some raised or lowered heart rate. Keep trying til you find something that works.Propranolol - Very strange feeling when I was on this. I can't describe it in words, but I didn't like it and this trial proceeded my current POTS crash. I may try it again in the future, but skeptical at the moment.
I was in the ER with aseptic meningitis after my secind dose. I know a patient with permanent damage from high dose IVIG given without any support medications, like steroids.IVIG - Aseptic Meningitis
I am not familiar with Jeff_w's story. Where can I find it?No. That sounds like a set of symptoms worth pursuing a structural problem with your spine and how it connects to your skull. A physiatrist, DO, or neurologist might be useful. Have you checked out Jeff_w's story?