Doctors In Ca

[Tachy Phlegming]

Hi there,

I am trying to find a doctor who will more precisely diagnose me in CA.

I would prefer not to go to Stanford.

Does anyone know of a doctor in CA who treats patients with dysautonomia and/or who could make a diagnosis?

Does anyone know of a doctor like this at UCSF?

I could go to a doctor either in Northern or Southern CA.

Still,

Tachy (120 bpm today! )

[iheartcats]

I'm seeing a specialist at Stanford for the first time in November. I've had issues finding a doctor who deals with Dysautonomia/POTS here so I just am waiting to see Dr. Friday. I've already been diagnosed with POTS, but not what kind or if there is something else I should be checked out for.

Any reason you don't want to go to Stanford? I called UCSF and they didn't seem too interested in helping match me with an EP/Cardio. I actually felt brushed off and was told "Any Cardio can deal with that" and that I didn't need an EP (I was seeing an EP in Chicago).

Please let us know if you find someone!

[Tachy Phlegming]

Why not Stanford? I'm sick and want treatment -- now, not in February. It's been a lot of years. I don't think I should have to wait so much longer while my various organs overwork themselves to death (some of them are really not doing too well) and while the rest of me can't function.

I know what I have and know what medications I want. That means no work at all for a nice doctor (unless he actually wants to look something up -- but I am beyond caring whether someone does that). I might want to go to Stanford eventually but want some help faster.

If any Cardio could deal with that (and by deal with that, I just mean, look at my heartrate, write down a diagnosis, and give me a few obvious meds), I'd be thrilled ... I've heard that before. I'm having a philosophical issue figuring out how much I can trust a receptionist or other flunky who says something like that. I've trusted it twice and the trust was misplaced.

Thank you for reporting your experience Cat Lady. It was very helpful. Maybe I should take a trip to Chicago.

By the by, do you have a doctor who manages your meds before you get to go to Stanford?

[iheartcats]

The Doctor who is managing my meds is in Chicago. He wrote a letter to take to my PCP that I need to maintain these Meds.

I'm slightly worried Stanford won't agree (even though I feel 60% better ON the medications). They asked when I made the appointment what I was on and said my meds are fairly standard for my POTS diagnosis. So I hope they don't want to change too much, too fast. I guess I will say this to them. I need to get back to work so we can't do a ton of changes at once. Small steps, please!

I don't know what I'd have done without my Chicago EP...I had an appointment with Dr. Grubb last March but was canceled by them about two weeks before I went...then I had to move in May so I never got to see him! I was so close to that important appointment.

I understand what you are going through, believe me. I don't like to convince new doctors that I really need the meds I'm already ON. Sometimes one gets the feeling doctors want to recheck things to make sure you should be on these meds...I've been through 18 months of trial and error to get where I am at.

And I understand about help now. I had a hard time finding a PCP in SF. Everyone wanted to stick me with a Physician's Assistant, even when I tried to explain I'm really a case that requires and MD even though I'd rather not have POTS!

[EarthMother]

Many many years ago I had my first tilt table test with someone at Loma Linda ... but gosh I can't remember his name. Sorry.

Since then, my "regular" cardiologist diagnosed my POTS with a tilt table test at my local hospital. My PCP of 10 years works with me to try various protocols as he or I come across them.

Good luck finding someone close to where you are who can help with the cybernetic steering along your journey.

[valliali]

I honestly think your best bet is Stanford. I have seen Dr. Friday, and I see Dr. Montoya as well. I have seen many docs at Stanford, but those were my main. I definitely felt like I was able to get in to see docs quickly if they felt it was important for me to do so. Dr. Montoya is one of the busiest doctors in the world I think, but he always squeezed me in his schedule, and made many exceptions to see me, because he believed it necessary. I don't have an appt with him until Jan this time around, because there isn't as much he can do for me. The doctors at Stanfrod, from my experience in CA, are the best you'll find in this area.

[erik]

I got fludrocortisone scrip from my primary care doc from simple Orthostatic Hypotension test and he even mumbled something about an acetylcholine thing (so I assume he was contemplating Mestinon)... I imagine you are hoping for more or different meds than that but it could be a start for you (if you hunt for a compliant GP/Internist). You'd probably end up stopping it later for more testing. Just a thought in case you do end up waiting. Other specialty centers can take a while too. Isn't like a year wait typical at places like Mayo or Cleveland??? I don't know but I thought I heard that.

This is a NO NO but I fake a "pressor" effect with pseudoeffedrine & coffee (but those are very problematic and not for everybody... not even good for me but I manage)... I hope that midodrine works for me later when I get my hands on it. I've also taken Adrafinil (the predecessor of Modafinil) which one can legally acquire without a scrip though it cannot be sold here in US nor prescribed by a doc. I've supplemented with choline to maybe get a little acetylcholine boost (like super mild Mestinon effect). I've done these things less as treatment and more as a clue as to what meds might help me in the future... but also out of impatience. This info/confession is offered without warranty

[Tachy Phlegming]

The Doctor who is managing my meds is in Chicago. He wrote a letter to take to my PCP that I need to maintain these Meds.

Ouch.

I'm slightly worried Stanford won't agree (even though I feel 60% better ON the medications). They asked when I made the appointment what I was on and said my meds are fairly standard for my POTS diagnosis. So I hope they don't want to change too much, too fast. I guess I will say this to them. I need to get back to work so we can't do a ton of changes at once. Small steps, please!

Ouch, ouch, ouch!

Everyone wanted to stick me with a Physician's Assistant, even when I tried to explain I'm really a case that requires and MD

If you like what you are on, would a Physician's Assistant give you a hard time or not give you the same meds? What would happen/does happen with them?

The doctors at Stanfrod, from my experience in CA, are the best you'll find in this area.

I really have an extremely big problem with waiting until February with no treatment. Is there a way to get in earlier for a quickie appointment? (like 10 minutes)

I am not looking for amazing specialization. I want very basic. But basic does include writing a diagnosis and a couple of meds for my bowels and bladder.

[Tachy Phlegming]

I got fludrocortisone scrip from my primary care doc from simple Orthostatic Hypotension test and he even mumbled something about an acetylcholine thing (so I assume he was contemplating Mestinon)... I imagine you are hoping for more or different meds than that but it could be a start for you (if you hunt for a compliant GP/Internist).

So wait, would he have given you what he was mumbling about? I want a mumbling doctor!!!

Actually, Mestinon is one thing I think would help me immeasurably. I, uh, asked for Nicotine spray. (I am writing in my sleep, I am not really admitting this online when I haven't quite admitted it to myself).

Does choline work at all? I sort of wondered about that.

I have to take sudafed. I can't eat when my nose is stuffed and it was really damaged irreparably when I was super sick with this for a lot of years.

[MelissaCrystal]

Unfortunately most of the docs I've gone to just hand me beta-blockers for tachycardia and anti-anxiety pills because they think anxiety is causing all my "symptoms". Most don't know about POTS or Dysautonomia and they think I'm a hypochondriac for daring to have researched it on the net before-hand. UCSF was nice to me, but unfortunately they don't know a lot about it. At least I couldn't find a doc there that did---if anyone knows one, lemme know.

I went to Dr. Friday at Stanford and it was completely worth the wait. And waiting is all I did...bed ridden and unemployed, being taken care of by someone until my appointment. Now I'm working and living pretty normal, managing my horrible daily symptoms like a pro and not having it impact me too greatly. Definitely worth it.

[erik]

The mumbling is a mixed blessing He also kind of mumbled sumpin bout blood test anomalies and remote possbl tumor... then said clearly "but don't worry about that" and changed the subject. I appreciate that he shares some of the speculative process and I just roll with it! Or maybe he was baiting me, doing a quick psych assessment for anxiety... who knows. Medicine is "a process"

I haven't made up my mind about the choline but I think it has super mild positive effect... I trickle a little of it in my water/NUUN/gatorade-powder stream (is it already in gatorade? might be)... I assume most of it ends up directly in the subsequent out-going stream. I've tried the "bitarate" form... don't know if that matters. Don't as me what the "right" dose is... I've no idea.

At one point recently, I had my first ever event of measuring totally normal pulse/BP holding steady as I stood up! That day did include choline, NUUN (for several days), high-salt/water (for months), Zyrtec-D + modest caffeine earlier (gotta watch the caffeine on top of pseudoeff cause I'll get flutter/tachy and have

). I think I had some sulbutiamine & piracetam shortly prior too. Just maybe, the combo came together and helped... I am mostly after mild energy boost/focus, "pressor" effect and whatever can make me kind of functional.

I'm continuing with different variations and pseudo-scientific measurements hoping to identify potential benefit of these things! This is mostly just to keep some sanity and trick myself into feeling less helpless as I wait for more direct medical options

[Tachy Phlegming]

Unfortunately most of the docs I've gone to just hand me beta-blockers for tachycardia and anti-anxiety pills because they think anxiety is causing all my "symptoms". Most don't know about POTS or Dysautonomia and they think I'm a hypochondriac for daring to have researched it on the net before-hand.

That's so inappropriate. Name-calling is so childish and so obviously ignorant as to the physiology of this disease. They should not extrapolate from their own experience with anxiety to the way you present in their office (which is, doubtless, 100x more severe than anything they've seen unless they've deliberately ignored others with the same problem).

http://www.pubmedcentral.nih.gov/articlere...i?artid=1501099

I hope you asked about the fine distinctions. Were they suggesting that you were also a hypochondriac or a hypochondriac without dysautonomia?

It would appear that your doctors (and perhaps some others ) believe that there is a very select, prestigious club of patients with dysautonomia who are in fact worthy of the disease. And who wouldn't want to belong to that club?

Thanks for telling me about your experience with UCSF.

And Erik, a baiting doctor sounds good. I mean, it would seem to give you the possibility of following up on some of the bait ....

[iheartcats]

Tachy -

I don't know how comfortable a PA would be with my 'weird' mix of meds (although they are not weird for a Dysautonomia patient).

My Chicago EP knows caffeine works for me in the AM and moderate amounts, as needed. He says that's OK. Some people it helps, others it makes worse.

Regarding Stanford, I go in November. You should at least make an appointment. I know 3-4 months goes by faster than one thinks, sometimes. You can always cancel, too. But the sooner you book it, the sooner you go.

I'm going to tell them after a long trial of different meds, my stuff is working now and what else can be done to improve myself. I'm not willing at this time to dump my 3 meds. Mestinon does help a bit and I only have to take 30mg/twice a day now! Very small dose.

So you have not been officially diagnosed yet? That's what you're running into? That might take a Stanford visit. Once your diagnosed I think it'll be easier to get treatment. Frustrating, I know.

[fighting4health]

I saw a Stanford neurologist last year and they couldn't figure out a diagnosis, but they were prompt, and thorough. I filled 13 viles of blood for all the tests they took, but all came back negative. They did diagnose me with neuropathy which helped stumble across dysautonomia info. A few months ago I saw Dr. Yan-Go at UCLA. She's a neurologist that specializes in dysautonomia. She diagnosed me with dysautonomia. She spent a lot of time educating me on the syndrome and the lifestyle changes I needed to make. She's a character for sure, but very helpful.

[Sophia3]

Got these names from American Autonomic Society's site. Don't know if you've seen these or not.

California - Return to Index

Annabel K. Wang, M.D.

MDA ALS and Neuromuscular Center

University of California, Irvine

200 S. Manchester Ave., Suite #110

Orange, CA 92868

Phone: 714-456-2332

Fax: 714-456-5997

Diabetic Autonomic Neuropathy

Amyloid Neuropathies

Frisca L. Yan-Go, M.D.

Department of Neurology

UCLA

710 Westwood Plaza

Los Angeles, CA 90095

USA

Phone: 310-206-8005

Fax: 310-794-7491

E-mail: fyango@ucla.edu

Multiple System Atrophy (Shy-Drager Syndrome)

Autonomic Failure (PAF, secondary Autonomic Failures)

Orthostatic Intolerance (POTS, mitral valve prolapse)

Sleep Distrubance and Autonomic Disorders

[Tachy Phlegming]

Sophia--

Would the woman at Irvine treat dysautonomia do you think?

The one neurologist I saw said he just doesn't diagnose or treat dyautonomia (I had called and asked if they ordered tilt table tests and thought that was all I had to ask). I was imagining therefore that something in their job description had to be more specific than Dr. Wang's.

I think I read somewhere that Dr. Yan-Go had recommended breathing exercises -- I have recently read too many articles on how breathing changes with heartrate in dysautonomia -- and want someone who really emphasizes prescription medications.

On the other hand, I should call there because getting in sooner would be worthwhile.

Thanks for pulling up that info.

Fighting --

Which neurologist at Stanford did you see?

What exactly did Dr. Yan-Go tell you to change?

Right now, I want proper tests and medication from a doctor. I've gotten sooo little of that over the years.

On the other hand, I have spent an inordinate amount of my time making lifestyle changes for so many years (even without having a clue as to what was wrong) that I am hard pressed to imagine too many more. This disease controls what I eat, where I live, where I go, how I sit, exercise, what I wear, whether or not I sleep -- and even a lot of what I say.

I think I will prefer getting my "lifestyle" advice from this site or thinking about what I read here.

Why is she a "character"? I might like that depending on what it means.

[MelissaCrystal]

Pretty sure they're talking about Dr. Karen Friday at Stanford. She's funny, real nice lady. Answers any and all questions, and has endless referrals for the best docs that treat all our ailments related to Dysautonomia. Only problem is that we're on long lists lol Each of those docs are hard to see. Definitely a connection to have though---she's also involved in all the studies at Mayo and has personal relationships with the top research people.

Dr. Karen Friday specifically treats and specializes in Dysautonomia--POTS.

[fighting4health]

I think the name of the neurologist in Stanford was McQuillen. He doesn't specialize in dysautonomia, and I was going searching for a diagnosis at the time. They are very good there, but he's not your guy if you're looking to be treated for dysautonomia.

Dr. Yan-Go put me on a high salt, high fluid, low sugar, low fat diet. I am supposed to take more rest breaks and nap every day. She also recommended yoga, water resistance training, and strengthening my legs and abs. I'm also supposed to avoid aerobics, avoid extreme temperatures, avoid hot showers and bathe sitting down. She took me off some meds I was on for migraines and has me using my anti-nausea med (phernegan) for migraine treatment. We also switched the time of day I am taking my meds and she also has me taking magnesium and calcium twice a day as a migraine preventative and it has amazingly helped out a tremendous amount.

She's a character because she doesn't like to be interrupted, but welcomes questions at the end. She may come off as harsh and unapproachable to some people, but she actually was very concerned about me and encouraged me to call her with any questions later. She even went out to the waiting room after our initial consult and spoke to my friend about my condition. She has dysautonomia herself and gave me tips that worked for her. I don't think they have TTT there. I remember her saying something about them cutting funding for their dysautonomia lab or something of the sort.

[Tachy Phlegming]

A doctor with dysautonomia who talks to someone you bring to the waiting room sounds like a wonderful dream. I'll call there.

I already had a TTT. I am wondering more about sweat tests and a test for EDS -- and I would want to try several standard medications.

[Tachy Phlegming]

Please delete this. I couldn't see that my post was entered when I first clicked it.

[Sophia3]

WOW. a doctor that goes to the waiting room to explain to somebody else your situation?! Indeed we need to clone her.

Hope you get to see her Tachy.