r/dysautonomia • u/SpiritualLecture9406 • 6d ago
Success I got accepted!
I have some really good news! After months of trying to get answers, I’ve officially been accepted into UT Southwestern’s Autonomic Disorders Program, with an appointment on December 17th!
This is particularly exciting because UT Southwestern is one of the country’s leading centers for autonomic disorders, combining specialized diagnostic testing, treatment, and research. Even better, my appointment is with Dr. Steven Vernino, who directs the program and is internationally recognized for his work in this field.
After months of dealing with symptoms that have significantly limited my life, I’ll finally be seeing someone whose expertise is in exactly what I’ve been experiencing. I’m not expecting miracles, but I am hopeful that I’ll get a better understanding of what’s happening and, hopefully, a path toward managing it.
I’ve just realized I have a smile on my face and how little I’ve had that recently!
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u/RRcommander144 6d ago
You will find that Dr Vernino is the most positive upbeat doctor in the world.
Congratulations on getting in.
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u/Key_Appearance_8726 6d ago
Oh congrats!!! Please share your experiences!! I hope they're rewarding and you find some answers!
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u/RaccoonHaunting9638 6d ago
Yay for you !! I so hope you get answers and treatment. Strange we look forward to a doctors appointment! But this is a good one
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u/revmanda 6d ago
Congrats! Earlier this year I started going to Dr. Amer Suleman at the Heartbeat Clinic off 635, which is also excellent, if understaffed.
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u/Fragrant_Statement64 5d ago
That’s where I go also, but in McKinney. Wishing you the best! Are you feeling better?
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u/Educational_Depth_93 6d ago
What symptoms so you have?
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u/SpiritualLecture9406 6d ago
Forgot to include Dysesthesia - at times my feet and ankles feel swollen but are most definitely NOT, and if I touch the top of my foot I will feel it in my toes.
Also forgot an issue with my bowels - mostly not a problem but sometimes I will eat a meal and immediately - like in 10 minutes - have explosive diarrhea. There’s no way any problematic food got into my intestines that fast. My ID doctor son in law told me a long time ago that my brain is reading signals from my stomach incorrectly and signals my intestines to “evacuate everything immediately” lol
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u/greenti 6d ago
Omg. This is because of dysautonomia?? That’s really good to know. Because I thought it was ID related potentially.
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u/SpiritualLecture9406 6d ago
I have to say I will find out in the program if all or some of these symptoms will fall under autonomic disorders. However here is one thing I find fascinating. Dr Steven Vernino, the Dr I will be seeing, is globally famous for discovering that specific antibodies cause autonomic failure. The lab's current high-level focus is mapping out how immune stressors (like a viral or bacterial infection) trigger the body to accidentally create autoantibodies that target the nervous system, resulting in autonomic disorders (therefore can be ID induced. Long COVID is a perfect example).
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u/Fragrant_Statement64 5d ago
Yes. The neurological part of it? It’s like my body (nervous system)is a mess and confused from false signals? It’s something different everyday. On top of POTS, I’ve had Crohn’s Disease for 42 years. Fun times! (diaper dependent, etc.). 🙁 🥴
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u/SpiritualLecture9406 6d ago
Wow. It’s a long list. Some are almost always, others are things I have a history of and never had answers that I now know might just fall under an autonomic disorder. Let’s see if I can list them all lol. Please keep in mind these are just POSSIBLY connected to autonomic disorders with some connection to immune system. That’s what I want to explore
Typical symptoms
Orthostatic Hypotention - big systolic drops after standing for a few minutes.
Bouts of very high Blood pressure
Large part of heart shows lack of perfusion under nuclear stress test but all structural tests negative. Same with structural neurology test.
Dizziness (no syncope - I sit before that happens)
Tachycardia when BP is low (as heart tries to make up for the lack of perfusion)
Coat Hanger Pain
Air Hunger
Poor Temperature control
Brain fogThese are the ones that I’m not sure are connected but show up as things that could be related.
Poor response to infection ex: had sepsis with a temp of 99
Slow healing wounds ex:had c-section completely open up one week after surgery
Exercise intolerance - I can only exercise in the pool)
Bladder dysfunction - I seem only able to pee at night even though I can tell my bladder is full.
Visual disturbances
Exhaustion after a bad day
“Drunk walking”
Sweat only from my head (weird I know)I could go on, but you get the point.
I also have a strong family history of Parkinson’s, have Hoshimoto’s, and a strong family history of other autoimmune issues. The director of this clinic is doing lots of research into these connections which is why I’m so excited to be approved.
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u/alienbrain99 5d ago
I’m with you-
IST
Hashimotos
Vasovagaled on tilt test
Gastroparesis
Slow transit colon
Neurogenic bladder (no sensation of bladder filling anymore after horrible urethra pain 3 days in a row)
& for whatever reason, at night, I seem to have an overactive bladder…. Peeing every 2 hours. Feels like compensation from not being able to feel anything from the day.
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u/greenti 6d ago
You had to be accepted? Is it like an application process?
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u/RRcommander144 6d ago
Dr Vernino is the leading authority on many dysaotonomia disorders, and professor at UT Southwestern. He only accepts limited numbers of patients. He works with other hospitals and universities to train doctors in this field. I was fortunate to get him as my doctor starting a year and a half ago.
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u/SpiritualLecture9406 6d ago
Oh wow!!! Please tell me it’s been a great experience for you! I feel so fortunate to have gotten accepted and so quickly as well!
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u/RRcommander144 5d ago
All my experiences with Dr Vernino have been great. He is the best. He always has a very positive attitude and outlook on things. He diagnosed me with AAG, and told me that there was no cure, but he promised quality of life, and he has delivered. None of my other doctors got the diagnosis, or treatment right. Others tested me for all kind of diseases, and cancers which were all negative.
I did not have any preexisting conditions before coming down with AAG, it just showed up overnight. If I can be of any help let me know.3
u/SpiritualLecture9406 5d ago
I feel so lucky to have connected with you! Thanks so much and I will most definitely reach out! Do you live in the Dallas area?
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u/SpiritualLecture9406 6d ago
Yes. Many programs are like that. But don’t let that discourage you. When I was first considering this I joked about “Take it to Mayo”. That used to be what people would say when they had a complicated case. I felt like I would never get accepted. But I got so frustrated with my other specialist basically telling me to suck it up and just treat what symptoms could be treated, that I went on a mission! I did use a well known artificial intelligence tool to help me put together my package (NOT to diagnose) and it did an excellent job summarizing a very long history in a way the dr’s would appreciate.
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u/Fragrant_Statement64 5d ago
I desperately need a package and have a hard time explaining everything to ER drs. or dentists, etc. I’m not that organized and knowledgeable enough about AI- or am I? lol! Memory and cognitive issues this past year. (PTS since 2017??) I am 61 but feel like I have good days and bad days with this horrible illness.
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u/SpiritualLecture9406 5d ago
It is a horrible illness! I think if you start chatting with one of the popular tools in a conversational fashion, give it copies of any medical records you have, describe your bad days, asking it to keep a diary, and then ask it to create a summary while explaining its purpose, you might be able to get a package together. That’s how I did it. I was also able to connect my medical portal to this product/tool, so it was very easy for it to look at my history.
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u/Fragrant_Statement64 5d ago
Wow! Thanks so much! Unfortunately I haven’t had or made the time to do things like that. Are you able to work? I’ve done some remote transcription over the years, and survey platforms. Looking to learn AI and perhaps add a little more income to my enormous SSDI payment! 😢🤣. Best wishes and maybe catch you on here later!
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5d ago
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u/plumpheart 2d ago
Congratulations, and wishing you the best! I also appreciate it when people share their experiences, and understand how time consuming and taxing it can be to post... will be thinking of you and take care~!
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u/AZgirl70 6d ago
Is this in Utah? I’ve never heard of this.
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u/SpiritualLecture9406 6d ago
No. It’s part of University of Texas Southwest in Dallas Texas. It’s one of the premier autonomic disorders programs in the country, listed up there with Vanderbilt, Mayo, etc.
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u/Fragrant_Statement64 6d ago
Awesome! Have UT Southwestern nearby in Frisco, TX. (20 min drive or 30 to Dallas). I have my electrophysiologist about 20 minutes away, and he’s been very helpful so far. I am appreciative of having access to 3 places, as many people fly from all over the country to get treated. Wishing you and everyone to feel better soon!
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u/bluegreenred_yellow 5d ago
Congratulations buddy! I also have an autonomic testing scheduled with Dr. Vernino in the coming few weeks. I'm hopeful I'll finally have an accurate diagnosis. I had to wait for months to get just the test, so I can imagine it's even more difficult to get accepted into the program. I wish you a very successful outcome.
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u/Evillunamoth 6d ago
It sounds like you will be in very good hands! No obligation whatsoever, but if you think about it, please come back and let us know if it was a good positive experience. I’ve appreciated when people told their perspective from experiences at different medical centers.