Treatment options for Dysautonomia

I've been trying to explain to all these different doctors over the last 1.8 years that I fully believe that it was the covid virus that my husband and I both had in late November 2019 all through December. We had the exact symptoms of this virus yet the doctors did not know about it and they just classified it as an unknown respiratory virus. Many people that I know several that lived in China at the time said that this virus was spreading through China as early as May 2019 yet the communist government of China cap it quiet and there's no doubt that's what my husband and I both had. I tried to explain this to the American doctors but they just do not want to listen they just think just because covid was not here until January 2020 that there's no way I could have had it in the end of November 2019. They're very very stubborn doctors. And yes I did have the antibodies test for covid and it came back negative and my doctor said that's because if I had covid in the end of November 2019 that the antibodies would have been long gone by now.

@abrown2 Gosh, i hoped we would have heard from you. How is your son doing? I just recently learned about Mayo’s care-network and thought you might give it a try.
https://mayoclinic.org/about-mayo-clinic/care-network/members
I do hope you find some help. Will you stay in touch?

@cdhouns I’ve been very concerned about you and your daughter. How are you doing? Have you had any luck finding care? I know you must be so disappointed and scared for her. You might try this link. It lists the hospitals that are part of Mayo Clinic’s care network. They are not in every state but it might be worth looking into.
https://mayoclinic.org/about-mayo-clinic/care-network/members
I’m also wondering if the Dysautonomia Clinic would recommend doctors who don’t work for U. Of Utah? Might be worth a try. Will you consider it?

Thank you so much for your concern. My son is the same. He just returned from CHOP (Children's hospital of Philadelphia) last week. It was good to have new Dr.'s evaluating his symptoms, but no diagnosis or anything yet.
Currently we are one a waitlist for Mayo. We have been on the list to schedule an appointment since late June. Once they finally book him, it will be a year. Being seen at Mayo right now is a low priority because we do not have year.

I am 68 years old and just diagnosed with one form of dysautonomia from a HUTT. I am just starting down (up?) This path.
I have Celiac disease, pernicious anemia, and UCTD.
IN November am going to an autonomic clinic where a neurologist specializing in dysautonomia will, I hope, define my diagnosis in finer detail.
I'm trying to educate myself.
Thank you!

@yellowdoggirl Guess I’m not familiar with ‘HUTT’. What does that mean? I’m glad you have an appointment with an autonomic clinic—-what state is it in? @cdhouns has been very worried about her daughter who needs to go to a clinic. Sure hope you will tell us all about your experience at the clinic! Will you stay in touch? I was able to find some information for you, but there was so much that i just included the link to the entire page:
https://www.google.com/search?q=dysautonomia&rlz=1C9BKJA_enUS796US799&oq=dysautonomia&aqs=chrome..69i57j0i433i512l2j0i512l2j69i65.20896j0j7&hl=en-US&sourceid=chrome-mobile&ie=UTF-8
Is your doctor looking at a certain form of dysautonomia?

@abrown2 oh, I’m so glad your son went to Children’s Hospital. Did he feel comfortable with the doctors and the things they were telling him?
Sending best wishes and hoping you’ll keep us posted.

Sorry, it's a Head Up Tilt Table Test. And the clinic is at the University of Connecticut at Farmington.
It has taken time, I wish you success!

Hi @becsbuddy
I don't know what form the doc is thinking about. Maybe I don't have it at all, except I have many of the symptoms including the positive tilt table test, although not disabling me, just annoying.
I did read on Mayo website that celiac can precipitate it.
I am not going until almost US Thanksgiving. Here, it takes 2 months to get an appointment with a specialist, according to my PCP. I can wait.
We'll see.....

It's very frustrating and extremely depressing to know there is no cure or real remedy for Dysautonomia or autonomic nervous system flairups.

I'm soooo fed up, exhausted and disgusted with the lack of help from so many doctors and specialists.

I'm tired of it. Tired of going to doctor after doctor over two years now with NO hope or remedies for this nightmare.

Debilitating and wide ranging symptoms that destroy ones daily life yet no cure and many doctors are clueless.

Mayo Clinics one year backlog is totally depressing too.

All of this is a nightmare and what makes it worse is that far too many doctors, even specialists in cardio, neurologist, endocrinologist etc have no clue.

I do have arthritis and a rheumatologist is only doctor I have not seen except for one time when he said I have arthritis in my knees, feet, fingers and my neck.

Racing heart, pulse rate and BP fluctuations, visual disturbances, muscle twitches, bowel urgencies, heat intolerance, constant ringing in my ears etc. It's all just insane.

Does anybody have visual disturbances where during these episodes you sometimes feel like you're going to faint but you don't, your vision just feels that way it changes. Also I get strange visual issues where it seems like my eyes can't keep up with the movements around me like my eyes are trying to catch up to what I'm looking at. I've been to ophthalmologists, eye surgeons, retina specialist etc and they say everything's normal. The many MRIs I've had of my brain and blood test and cardio test and every endocrinologist test you can think of, x-rays of my back my kidneys, every test you can think of yet everything comes back normal.None of this makes sense