Dysautonomia Clinic in California?

[the_mighty_gooch]

Does anyone know of a Dysautonomia Clinic in California? I heard there is one at UC Davis but couldn't find it online. Also, I heard that the UCLA clinic is substandard. Which is the most comprehensive clinic in the country: is Vanderbilt superior to Mayo in Minn?

Thanks!

[weknowourbodiesbest]

This is old, but it popped up in my search engine for "pots clinic california" so I want to leave this for anyone who might be wondering so what happened to me doesn't happen to you (gastropersis, vomiting, losing 30 lbs in about 6 months, and much more, and before that, a lot of medical gaslighting, mental health referrals, and being told i had "orthostatic intolerance" and to eat a lot of salt - among the more believable forms of medical abuse)
I have elhers danlos and am 32 and just found out. I am driving 6 hours to an EDS clinic on the elhers danlos society website from sacramento to upland. The woman was so lovely and said she would test for POTS and that it's so simple (it is). I've suspected hyperandrenergic POTS or inflammatory POTS since I first heard about it 5 years ago, but eh, you suggest something to doctors and they have some oppositional defiance disorder, because how dare you know something they don't (especially if you have any anxiety/agitation around them and/or come from a marginalized background - the two often walk hand in hand unfortunately.) My neurologist has diagnosed me with POTS just from the cluster, but won't verify, tell me what kind, or treat, and prescribed a medication that would make it worse and would have killed me with my family history if I hadn't caught it.)
I have gotten really ill, and no one will treat what they know I have as they rule out what else there might be. It's been 2 years and I've fought hard, and in the pandemic even 2 ER trips after passing out once and stroke symptoms the other were fruitless. I'm 32 and things could have gone different, and now i'm having to fight for my life.
The elhers danlos society website is helpful and mentions dysautonomia clinics specifically since it's so common in my condition. I'm getting names from where I'm headed as well of places in the california area related to my issues. (and if anyone has POTS symptoms - can you touch your thumb to your wrists? EDS is the most neglected condition in the world and i wish i would have known sooner. They have been incredibly comprehensive and so helpful since it's such a complicated syndrome and don't just give a bandaid prescription. There are not many but it's something.)

ps. don't fall for stanfords "we communicate with all your doctors!" bs. I was very sad when i got gut issues 6 years ago and had to go on painkillers how horrific their GI doctor was. It's been a bumpy road but if anyone sees this, stay hopeful, keep fighting, i love you.

[Heiferly]

If you're near Johns Hopkins, you may want to look into Union Memorial hospital in Baltimore (near to the JHU Homewood undergrad campus, actually). They have a doc there who specializes in POTS and dysautonomia diagnosis who I've heard very good things about.

[Icannot]

Thank you..I live in the Phoenix area and am so glad to read your reply..please feel free to post me if I can help ..anyone coming here..I will contact that doctor

[maith]

hello i have been suffering from syncope for 7 yrs now also have epstein-barre virus my symptons are getting worse i am my own advocate. mt g.p. and cardiologist refer me to neurologist so i have been researching and i am very glad i came across med help as i am at the end of my rope very poor quality of life.so i need to find the very best neurologist,as i have been through this so many times,i live near john hopkins but i feel i would prefere to go to the top people in this field. thank you so much for all your help and imformation  rovan

[Heiferly]

WOW sound the FOG HORNS!!! Brain fog rolling in!!! I just needed to read my own post on *this thread* to jog my memory ... Oy vey.

Okay, it's UCLA where I was remembering calling because I was trying to do a little detective work on that Dr. Yan-Go who is a sleep specialist that purports to also specialize in autonomic and run their "autonomic clinic," but the hospital has no knowledge of this! Also, patients have complained here numerous times about her, enough so that's she's probably the one doc in the whole country that I feel OK giving my personal opinion about openly: not good for autonomic stuff. She mainly rxs Tums and Yoga, if I recall correctly.

I *did* have contact with Stanford at one point but it was via email with a neuro-muscular guru there. He said they don't have an autonomic lab there, and indeed confirmed that he didn't know of one out west at all. This was several years ago, however, so I can't confirm if this is still true.

I'm sorry I can't be more helpful with this. If I could toss you guys one of our labs here in the Midwest, believe me I would have by  now!!!!

[Heiferly]

Wasn't Stanford the hospital I called because there was conflicting info about their autonomic testing, and when I called the hospital they had no knowledge of autonomic testing at all and had no clue why it said that on their website? I'm going to have to do some detective work through old posts to try to see if that was it.

[enzymelover]

Anyone on the West Coast who is near Stanford could see neurologist Dr. Safwan Jaradeh. He is the Director of the Autonomic Disorders Program there, and very knowledgeable about POTS, autonomic neuropathies, gastric dysmotility, cyclic vomiting, syncope and other specific disorders.
The Stanford website says they do autonomic testing, but I can find no details as to what that testing includes.

[mtgardner]

This is really an old thread but I wonder if we can re-raise the question of where testing is available and how people have fared with different doctors.
It is really deficient on the West Coast.

I have made several trips to Mayo Arizona to see Dr. Goodman with good results. I have had autonomic testing done there including QSART testing and catecholamine testing plus the tilt table test.  I also had a biopsy there for small fiber neuropathy.  They also discovered my sleep apnea.  

I did initially send a letter to Mayo Rochester and got a form letter back that  discouraged me from approaching them again.   I think this was unfortunate and have heard it has happened to others.  Remember that Mayo has three campuses in Minn, Florida and Arizona.  Each ones has different doctors with different abilities, focuses and practices.  The same is true of different campuses for other institutions.  If we compare notes here on those who have treatments that are helpful we may well find a plethora of doctors who can help us. I should emphasize I do not have POTS.  I have heard of many people with POTS getting excellent care at Cleveland Clinic.

  My doctor at the time also had a hard time trying to get me an appointment at Cleveland Clinic due to some type of telephone tag that ensued where she got conflicting information about how to even apply for an appointment. I know this is much different then others experiences there so I think it was a fluke!  I have  heard mainly good things about Cleveland Clinic from most people who have been there.  I do know that they and Vanderbuilt have a good reputation with autonomic dysfunction.
Dr. Grubb's name comes up repeatedly. I  think perhaps Johns Hopkins may be another area to investigate but have no idea what they have available in autonomic testing. Maybe someone else here knows.

While I have heard some negative things applied to individual experiences at some well known academic centers I think we need to remember that a big academic intstitutional name alone will not mean necessarily the best service.  The doctors at any facility or the heart of the matter and an academic reputation fails if doctor do not apply effective medicine to patients.  

I really think the doctor you go to makes a difference and that sometimes
we forget that.  There is a list on POTS PLACE of some doctors who treat autonomic dysfunction but word of mouth on the  forum goes a long ways.

The average neurologist has limited experience with autonomic dysfunction. I have been told by at least five neurologists in a town in Oregon they do not feel comfortable treating me due  to their lack of expertise in this area.  Neurology is a highly specialized field and you should be looking at the history including interests and publications and research of any neurologist you see.  If you have autonomic dysfucntion it needs to be quantified and studied at a place that has equipment to do that.

I have wondered too if Oregon's Health Science in Portland has some ability to test in this area or may have doctors with an interest and experience in this area but I do not know for sure.  I hope others here may have had experiences they can share that are successful.

Most of us have more then one health problem and we need to build our team of doctors carefully.  Sometime another doctor in a different specialty can be very helpful.  We do need at the core of our care tho someone with the experience and expertise of treating patients with autonomic dysfunction.  They may be a consultant but their input is invaluable.

[LivingInHope]

I'm sorry you and your daughter are going through these difficulties.  If you want to have further testing for your daughter, it looks like it is an option worth exploring:
http://www.mayoclinic.org/neurology/autoneurogroup.html

Hopefully, they would have some recommendations in regards to treatment to pass along to her primary care person for her dysautonomia.

[Cheriseourredhead]

Good morning, my daughter has dysautonomia, EOE, POTS, chronic fatigue, vocal cord dysfunction etc.. and in and out of hospital.  Drs here say it will get worse and can only treat the symptoms.  I want to go to the Mayo Clinic in Minnesota, which is cash.  Would you recommend doing so.? All her Drs, dont talk together and feel she is on too many meds. People say UCLA has testing...saw one nero dr there no testing was ordered only assessment.

[Babapa]

I live in Seattle and recently learned of the Dysautonomia Lab at the University of Washington. Han anyone perhaps visited? What is your take from the list of tests they have? Thanks!

http://pcs.hmc.washington.edu/epilepsy/EpiInfo/ans.html

[mtgardner]

I live in California and to the best of my knowledge there is no full autonomic lab in the Western part of the U.S.  The closest is Mayo in Minnesota or Cleveland Clinic in Ohio or Vanderbilt in Kentucky.  NY has one too I believe.  Let's hope the Arizona lab gets up to full tilt so to speak.  Marie

[Heiferly]

Just to clarify, the autonomic clinic in Arizona is only a partial lab (unless they've recently gotten new equipment and we've somehow missed a press release).  It is likely sufficient for a good proportion of the dysauto patients here on our forum at MedHelp, but lacks many of the tests available at the "full" autonomic testing facilities (and some of these tests may be needed by certain patients with more extensive autonomic dysfunction).  I've heard that Mayo did used to have a full lab that was operational in Arizona but trimmed it down some years back for some reason (likely financial reasons?  or maybe there weren't any researchers out there pushing to keep it open?).

In addition to QSART and TTT, I do not have the current list of autonomic testing available at Mayo AZ.  If anyone out that way wants to call there and ask for that list, that might be helpful to have on hand.  Sheesh, we really need to get these lists compiled on in one place like on a health page instead of having them posted willy nilly all over the place (and by we I mean me).  Ugh, I have so much on my plate and so little time and energy.  If only I could take a break from being sick to get it all done...

[tkimber]

Hi, I just wanted to tell you that I am in Nevada and recently had to make a trip to Arizona, after looking and exhausting all of my options in California also.  I went to the Mayo in Phoenix and had a great experience with Dr. Goodman.  He does have a full autonomic lab and the QSart machine that is so hard to find.  I had to pay out of pocket since my insurance doesn't cover it, and I told him I'm financially challenged and he was great about doing the bare minimum and leaving the rest up to my docs at home.  Please let me know if you have any questions.  And I think it's Mary that does the QSart testing and she is wonderful and the tests were so easy.  No worries there.  

[Heiferly]

I talked to several neurologists from UCLA on the phone earlier this year; they have none of the major autonomic testing equipment (QSART, radionuclide hemodynamic, etc.) even though they are one of the nation's top hospitals.  Several of the neurologists I spoke with there were ignorant of the names of the tests, implying to me ignorance of the field of autonomic neurology in general because you can't keep up to speed with peer-reviewed journal articles in this field without coming across the names of these tests.  There is one doctor at UCLA who lists herself as an autonomic neurologist, but again, unfortunately there is no autonomic clinic there for testing.

In fact, there is no autonomic clinic that we're aware of west of Mayo, and we've hunted extensively.  

So far as comparing Vanderbilt to Mayo, I would say Mayo is superior in terms of national ranking overall as a hospital so if your case needs to be investigated beyond the realm of autonomic, Mayo could be a superior hospital for you.  Vanderbilt gets a great deal of research money from the government for autonomic and so has many clinical trials available.  Likely, for many patients, the difference is splitting hairs--these are two of the best hospitals in the country and two of the only autonomic clinics in the world.  They both house some of the most published and highly respected experts on dysautonomia on earth, likewise with Cleveland.