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


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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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@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!

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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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