Help finding diagnostic testing near Nevada

[tkimber]

Hi, I am new to this site, just recently diagnosed.  Does anyone have any specialist, besides UCLA to go for testing for dysatuonomia?  Am having a communication problem with UCLA. After waiting over a month for an appointment and trying to convince the front desk guy that I do not need a sleep study test, I was finally sent my paper work... for sleep disorder. I have told them three time, I'm not going there for a sleep study.  Am not well at all and have an awful time traveling since my blood pressure drops severely when we travel.  If the severe drop in blood pressure happens at home, I can get in an ice cold tub and it helps, but not sure what I will do out in the heated desert if anything happens since we have to drive from Nevada.  But any help would be greatly appreciated. If anyone has had a good experience with Dr. Yan Go, I would love to hear it. I'm trying to stay hopeful.  Any ideas about Mayo in Scottsdale? Thank you for your time

[Heiferly]

Mayo Arizona is the closest dysautonomia clinic to Las Vegas, unfortunately, and it's not a full clinic like the one at the main Mayo. However, it's sufficient for *most* people with autonomic dysfunction. I would recommend trying to be seen there. If you're willing/able to travel further, I recommend Cleveland Clinic or Mayo Clinic's main locations. Vanderbilt also has an autonomic clinic, but some patients are left with the impression that their grants/research interests are prioritized over the needs of individual patients.

[cobovielma]

  I also have dysautonomia and I had 2 ablations which didn't work .. I had them before I was diagnosed with dysautonomia I still do not know what type because my cardio electrophisiologist did a tilt table test and can not read it... I am having a hard time finding a doctor specializing in dysautonomia in las vegas... I am thinking about going to mayo in Arizona.. I am right now on midodrine which helps to keep my BP up but at the end of the day I need metropolol to stop heart from beating fast... I need a real doctor that specializes and give me the right prescription and help me to feel better... help

[LindaTX]

Hi. it is a 2-3 day car trip to Dallas and it has been hot as heck here.  What about Mayo in Scottsdale, AZ that you were checking on?  That would be so much closer to you.  If you are also having thyroid issues have you talked to your endocrinologist about the diet?  I can't drink any carbonated drinks at all...I practically lived on Perrier for the past 10 yrs because of high blood sugar levels.  It has caused me to have digestive issues.  So now I drink plain water only.  I am trying to stay on a more alkalyzing diet but my a-fib episodes are still giving me problems.  My Dr wants me to have an ablation in the fall, so I guess we'll see.  Can you tell a difference drinking the alkaline water?  Take care and lets stay in touch.  Where in Nevada do you live?  I loved the climate in Vegas but we didn't live there in the summer months. :)

[tkimber]

Hi Linda.  Yes, Dr. Levine is in Dallas.  I see that he mostly deals with POTS, which I don't have.  But maybe he deals with it all, it's such a long drive for us.  Am canceling my appointment with UCLA, was having awful luck with that situation.  Not a good sign.  I bought the Alkaline book at Whole Foods.  I'm mostly doing the alkaline water.  Our water is as hard as cement here and I think just doing that will help.  Some of the alkaline foods I can't eat and make me quite ill.  But I just went to the quick care a few days ago.  My thyroid was severely hyper, so that is adding to the stomach issues.  I had thyroid cancer and they have to keep it very high, but not that high.  Doctor said that triggered the dysautonomia.  So after a few days of no meds and lowering my dose, am feeling much better.  Thank you for asking.  I hope that you have a healthy day.  :)

[LindaTX]

I was gone and did not see your post.  I have not heard of a vagus nerve stimulator.  It is implanted?  No, I have not heard of Dr Levine.  Houston? Dallas? Where is he located?  I hope you are feeling better.  Staying mostly alkaline is proving harder than I would have thought.  How are you doing with it? What book did you get on it?  I've got lists of foods and drinks off the net but I would like to get a book.

[tkimber]

LindaTX,
Sorry I took so long getting back to you.  Have not been well, very sick to stomach and having a lot of pain.  Thanks for your response.  I did not know that there was a link between seizures and vagus nerve.  That's interesting.  I only have the seizure if my blood pressure drops extremely low.  Whatever it is it's scary.  

Okay, I went to Whole Foods today and got my alkaline book and water.  So I will give it a try.  My tummy is mad, which brings on all the above issues.  It's worth a try.  

So sorry about your heart issues.  I know that can be a bit scary, I hope that you are feeling better.  The quick care doctor was telling me that I might need to consider a vagus nerve stimulator.  Have you tried this?  I'm sure it's not a pleasant surgery.

I called a doctor in New York who works at a dysautonomia center and she recommended that I try Dr. Levine in Texas.  That's the closest I have available unless I go to UCLA which isn't panning out so well.   Have you heard of this doctor?  It's a long way from Nevada, but if he's good, it would be worth it.  And shocker, they take my insurance.  
Have an awesome weekend,
TKimber

[LindaTX]

No, I believe I do have some dysautonomic symptoms but my main issue is an arrythmia that can come on at any time, a-fib.  I am currently trying a different diet which includes more alkalyzing foods and drinks and much less acidifying foods and drinks.  When my digestive system gets aggitated it aggravates my vagus nerve which in turn disturbs the electrical circuitry of my heart.  My blood pressure remains fine although I have noticed that my diastolic pressure goes up just prior to one of these events.  You may or may not know that there is a concrete link between seizures and the vagus nerve.

[tkimber]

LindaTX, Thank you so much for your post.  I will check into this clinic.  I have no idea if mine is cardiac related, although I have been to a cardiologist adn all they found was a small leak that will not have to be dealt with for years, too small.  As a matter of fact, I really don't know much about the type I have.  I will check into Dr. Croke, no joke.  :)  That's funny.  I wonder if I can put up a list of symptoms so I can be steered in the right direction.  I know that I have the type that causes my blood pressure to drop extremely low and can cause seizure type situations.  May I ask if you have this type?  

[LindaTX]

When we lived in Vegas we visited the Eisenhower Facility in Palm Springs.  It was cadiac-related but they may have a dysatonomia clinic.  I went to a Dr. Mitruska, I believe.  In Las Vegas I also had a very good Dr. in cardio, Dr. Croke, no joke.