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Any other great Dysautonomia places besides Vanderbilt? Need accurate diagnosis as well.


CallieAndToby

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So they've received everything at Vanderbilt but said it would be 4 months before an appt. I really can't wait that long, especially the shape I'm in, it's affecting everybody, and I'm miserable. I do need some sort of accurate diagnosis. I live in North Florida so Georgia is even doable. I know Dr. Rowe personally but he's a pediatric otherwise I'd see him at John Hopkins. 

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dear @CallieAndToby22 - unfortunately 4 months is a relatively short waiting period. My specialist has a 18 months waiting list for new patients! I think it is probably better to wait for Vandy - but if you find someone before that you could go there too, just don't cancel Vandy. They can do all of the testing right there and have pretty much seen it all - so you should be in good hands. Worth the wait IMO. 

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18 hours ago, CallieAndToby22 said:

So they've received everything at Vanderbilt but said it would be 4 months before an appt. I really can't wait that long, especially the shape I'm in, it's affecting everybody, and I'm miserable. I do need some sort of accurate diagnosis. I live in North Florida so Georgia is even doable. I know Dr. Rowe personally but he's a pediatric otherwise I'd see him at John Hopkins. 

I guess you’ve checked with Dr. Randy Thompson to see if he is taking appointments?

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On 11/13/2020 at 12:00 PM, Sushi said:

I guess you’ve checked with Dr. Randy Thompson to see if he is taking appointments?

Dr. Thompson is officially retired. He's trained some new guy who is a family medicine doctor. If you want to know more about Dr. Brannon, pm me. 

 

On 11/13/2020 at 11:38 AM, POTSius said:

@CallieAndToby22

Sometimes you can call and ask them to put you on a "cancellation list."

They would call you if someone else suddenly cancelled and you could take their spot

I think people with dysautonomia cancel all the time due to their fluctuating health, so I think there is reason to hope!

That's a good idea. Thank you. 

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Try Dr. Vernino in Dallas .He was one of the main specialist speaking at The Dysautonomia International Conference . I just had a telemedicine appt with one of his associates. I could have autonomic testing done next week but I can’t get there. 😞 Also with pandemic I’m a little concerned. I am going to wait until March. 

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  • 1 month later...

UTSW Dallas neurology is quite good - all bright, thorough, highly intelligent and well trained neurologists. Praise from me is saying a lot since I've had some really poor docs in the past. Dr. Steven Vernino is very nice, as are his associates Dr. Kyle Blackburn, and Dr. Lauren Phillips. Dr. Elizabeth Golden did my autonomic nervous system testing, also nice.  They will treat you seriously and with respect. Dr. Lauren Phillips manages my case now. I have a video appt. next week; it will be interesting to see how she responds to my award-winning herbal program which has made me feel almost normal. My latest endocrinology tests were the best they've ever been, that doc at least will be (should be) happy for me when I see her next week. She supplied my referral to neurology when she was worried about me dying on her. 

The UTSW-Dallas neurology dept. occupies a floor in a free standing high rise and they are very covid-safety conscious. No worries. The autonomic testing last July was actually pleasant and interesting. No worries there. The tech was very sweet and competent. 

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8 hours ago, HCD77 said:

@RexieDr. Golden is my doctor. I have only had a telemedicine appt. If you don’t mind sharing , what is your award winning herbal program? 

Hi HCD77! I put my herb program into the thread "Dr. in Texas denied my referral" if you don't mind checking there (saves me time, I'm a slow typist). Raked tons of leaves in the backyard today - glorious to do and feel OK afterwards with continuing help from bacopa & ashwagandha as well as prayer. Have my video visit with autonomic specialist tomorrow morning (did send her a message with herb links so as not to catch her too by surprise). Not all docs like herb-takers but for me they are a non-narcotic blessing. I couldn't even remember what "normal" felt like anymore after so many years of h*** so it has been an interesting and most pleasant journey these last few months. 

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7 hours ago, toomanyproblems said:

What does an award winning herbal program even mean??

Communication skills are obviously not my forte - too long out of practice, too long in misery to have cared. Sorry for the confusion. My herb program works to make me feel more normal and pain free, thus it is "award winning" to me. Here it is (my herbal program designed by me for me): 
Himalaya Bacopa - 500 mg whole plant powder and 250 mg whole plant extract per tab (I take half a tab 4 times a day) - for pain and autonomic dysfunction
Himalaya Ashwagandha - 670 mg root powder per tab (I take one tab 4 times per day) - for pain, extreme muscle stiffness & anxiety
Himalaya distributes dependable products ensuring you get what you want with consistent ingredients over time. Herbal sources are often a problem for people wanting to try them. 
If I'm having a really bad day, I'll add a capsule of Solaray Passion Flower (passiflora incarnata, 700 mg aerial and blossoms) or drink a cup of Chamomile tea at night or add both. 

To bring this back to topic, my autonomic specialist from UTSW-Dallas (Dr. Lauren Phillips), was great today and we covered all my questions in a relaxed tel-a-visit appt. She was glad I had my herbal helps and was interested in them. It is a relief to me not to be at odds with her over herbs.  She will be helping me find a new PCP I can work with, perhaps in integrative medicine or functional medicine. Up with UTSW-Dallas neurology! 
 

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On 12/31/2020 at 9:44 AM, Mike Fong said:

https://www.mayoclinic.org/biographies/cheshire-william-p-jr-m-d/bio-20053262

Mayo Clinic in Jacksonville. Specializes in dysautonomia. Scheduled 2-3 months out.

thanks that is the closest place to me I'm scared of mayo just b/c I've been 4 times starting at age 17 and they kept telling me to see psychiatrists but maybe now with the tilt table tests and the cancer, I won't get pushed aside 

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