Doctor at a loss

[Dizzy Dame]

I went for my follow-up today with my cardiologist. I assumed we'd go over the results from Vandy and plan a treatment strategy. Oh, how silly of me

I got there and my doctor hadn't read anything Vandy sent him. He didn't know what the methylhistame results meant, and asked me what Midodrine was when I told him it seemed to be helping. Keep in mind this man is a cardiologist, one of many doctors at a very large cardiology practice in Northern Virginia which has an excellent reputation.

I asked him if we could repeat the methylhistamine test since the first seems to be non-diagnostic, but he said that's not something he does. When I asked him where I could go to get that done he mentioned Johns Hopkins passingly but didn't give me a name, or even the type of doctor who'd perform a test like that.

I'm not sure what to do. I like this doctor, but even he admits there's not much he can do for me, although he's willing to learn. It's not like I can just waltz into Johns Hopkins and ask for a methylhistamine test

Does anyone have any advice? Or know of any good docs in the D.C./Baltimore area. I'm willing to travel provided it's worth it. Or, does anyone know what kind of doctor would figure out my methylhistamine levels?

Thanks,

Lauren

[Lukkychrm42]

I"m going to see Dr. Abdallah next week- he's on the DYNA board and was recommended to me. If you want to stick with your doc, he can always refer you to JH for the test (if they perform it there). I didn't ask myself, but is it worth e-mailing Bonnie (since she's better at responding!!) and asking her if she knows or if she can find out what the results mean?

I know how frustrating it can be, so I hope you find someone willing to help you!

[cmtaylor5]

I had a very similar exchange with my primary care doctor last month. I'm assuming that you are interested in pursuing a diagnosis of Mast Cell Activation Disorder. Both my neurologist (who has done some testing for me) and my internist suggested I see an allergist for MCAD testing. Neither of them did it themselves and confessed to not knowing much about reading the results. You might want to call around and see if an allergist in your area does this test.

As you may know, treatment for MCAD isn't very difficult (most of the meds are OTC) and I've read that people who have this disorder with POTS really improve dramatically with treatment. If MCAD isn't what you're wondering about, I apolgize!

Good Luck,

Carolyn

[janineerrn]

In general with all my docs, I go in armed with info: Why I need the test, a copy of what the test is from a lab book or from online, journal articles on why I need the test and how it related to my condition, the name of the lab that does it (I call and ask and see if they take my insurance, I ask them to fax me instructions on how to draw, process, and ship the blood/plasma/serum....) Once I talk my doc into doing the test, the lab lady at my docs office is great, she finds it interesting and even mkes slides of my blood and looks at it under a microscope.

I do the same with meds... armed with info.

I made it very clear that I am tired of playing games.....

It has gotten easier since. My doc told me she didnt know anything about POTS but would learn, and she has.

Thank GOD!! Its almost 3 years later, its not perfect but its not bad either.

Yack Yack

My point... find that doc that is willing to learn and educate them :-)

Peace

Janine

[Dizzy Dame]

Carolyn,

I am interested in persuing the MCAD testing since I expereince almost all the symptoms of someone with MCAD. I'll try to find an allergist, or call my doctor and get a referral to Johns Hopkins. Ugh! This is sooooo frustrating.

- Lauren

[UnicornIsis]

I would reccomend Dr. Abdallah too. If you call, explain right away that you are a POTS patient because he's a pediatric cardio, but he treats older people (our age and older) who have POTS. I'm a member of DYNA also, and many of us there see him. People come from all over the country to see him and some have come from other countries just to see him for POTS and NCS. If you don't want to see him, or he won't because you're too old, then explain again that you're a POTS patient and ask him for a reccomendation for a POTS doc or a doc that can treat you for it in your area. If you can't talk to him, try talking to Allison Greenleaf, his resident. She's really good!!!!! And she's learned a LOT about POTS from him really fast.

I hope this helps.

[Poohbear]

It wwas my understanding that this was one of the tests that all facilities send off to Mayo. You may also want to do a search on this site because this was also discussed sometime last summer I think.

Call Mayo clinics lab and ask about it. Somebody on this site has gotten the kit from Mayo so that the next time they had a spell they could collect the specimen and mail it off to Mayo to be analyzed.

[Sunfish]

another option doctor-wise that i would recommend would be Dr. Ramesh Khurana. he's a neurologist with offices in Baltimore (at Union Memorial Hospital) as well as in Columbia (which is about halfway between Balt & DC) and i think Pasadena (never been to that one...). i can get you his contact info but am in bed at the moment and don't have it handy.

he did a lot of testing on me though prior to my vandy trip that they were pleased to see i'd had done & is open to out of the box options too. i don't know what his thoughts/experience is re: MAST b/c it wasn't something that applied to me but i would think he'd help you pursue it.

i have yet to find the perfect doc & he's not that, but he is definitely up on the autonomic world to a large degree:-)

i also really liked my allergist in baltimore and he had some knowledge of/familiarity with dysautonomia. not sure if he does MAST testing as he's not affiliated with a hospital but if not he might be good for suggesting the best place to pursue testing?

i've had good, bad, & neutral experiences at hopkins. most recently the best (adult) autonomic specialist there pretty much told me i was beyond his knowledge base/capabilities. there's a great peds doc but he doesn't accept new patients. i'm sure hopkins does do the MAST testing though; it's just a matter of figuring out who you need to see.

good luck & let me know what if any of the contact info i should send your way...

melissa