Happy To Share With You That Doctors Are Learning About Pots

[doctorguest]

Hi everyone,

As you know, I am an advocate for patients with autonomic dysfunction, and I always try to educate my colleagues about these disorders. As I wrote in another post on fibromyalgia, I belong to a community of physicians who discuss various issues in medicine and patient care. I just recently joined that community and found what most of you already know - that many physicians are not educated on the issues of autonomic disorders. I have seen more than a few cases that other physicians post there that involve patients with POTS, NCS, etc., where doctors don't know how to approach their problems, or worse, where doctors think that patients' symptoms are "psychiatric" in nature.

Well, a few weeks ago, the community had a contest where physicians submit cases/posts on various conditions and vote for whatever post is interesting/important/valuable to the medical community. I found a post on POTS treatment (written way before I joined there) where a very informative discussion took place on POTS and POTS treatment (again, not without some nasty comments from the non-believers). I nominated that case, and this is what I wrote in my nomination explanation:

"After reviewing the postings, I've nominated the post on POTS treatment. I think the post raises awareness for a disabling neurologic disorder (POTS) that is commonly misdiagnosed and misunderstood. The patients with POTS, who are predominantly young women, often represent an under-served patient population, both in obtaining proper diagnosis and appropriate treatment, not unlike MS patients were some 40 years ago. The post illustrates confusion and skepticism that exist in the medical community with respect to a relatively new field of neurology, the autonomic disorders, and encourages further education and research among health care providers."

Today I received a notification that this post on POTS treatment won the contest, and that both the author and I, as a nominator, are winners. Quite honestly, when I nominated that post, I didn't think doctors would be interested in this as there were other posts nominated about disorders that are more common and well-recognized. I was very pleasantly surprised when I saw how many doctors voted for the post on POTS. The medical community IS listening and taking notes. The care for patients with autonomic disorders WILL be better, and hopefully soon, nobody will have to be subjected to misdiagnosis, disbelief or ridicule for these disorders.

[MightyMouse]

That's awesome! Meanwhile, I'm now on the hunt for yet another primary care doc... here's crossing my fingers and toes that I can find a decent one.

Nina

[morgan617]

Well, howdy doody!!! Thanks for nominating this and winning!!!! You do us a great service and please know how much it is appreciated....btw, can you get the doctors where I live out of the stone age?????? I think they still believe MS is in your head, and I don't mean physically.

where is that covered wagon sophia???????????

Thanks doctorguest! gratefulmorgan

[MomtoGiuliana]

Wow, I am very glad to hear that!

[yogini]

Doctorguest,

Thank you! It's sad to say, but I'd be thrilled to see POTS/dysautonomia receive even as much recognition as CFS or MS. At least most people have heard of them, and that is a start!

-Rita

[ellen]

Doctorguest, You are a winner, even if the article HADN'T won. Thankyou so much for your support.

[corina]

doctor, you really are the best!!!! thank you so much for doing this for all of us!!!

i was wondering, is this community national or international? i know that doctors (my neuro and doctors of other specialism) from my country travel to the us and canada (or else) to visit conferences about dysautonomia. also, i once was told by my neuro that doctors have different opinions about dysautonomia. some say it's a disease others say it is in your head. at that time i didn't dare ask him what site he is on . . . .

again, thank you for your work for us!!!

corina

[pearsjon]

i just want to know what designer u were wearing?

and did u thank the academy and god for the winning?

LOL

this is great. thanks dg.

[dizzygirl]

WOW!!!!!! that is very cool!!!! thank you!!

[DancingLight]

Bravo! And Thank you.

The following article is for doctors like you:

MY TURN

Falling Into a Medical Abyss

Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home.

By Mark Schreiber | NEWSWEEK

Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia."

I run my uncle's internal- medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer.

Yet during my first trip to the oncology ward?oncology because there are no wards for aplastic anemia?four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine.

Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system?you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer.

But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name.

After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me.

Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me ?"

He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.

So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.

Schreiber lives in Columbus, Ohio.

Schreiber lives in Columbus, Ohio.

? 2008 Newsweek, Inc.

[doctorguest]

Thank you all for your responses, and thanks, Emily, for posting the Newsweek article.

Firewoman, no, I didn't walk the red carpet and didn't make any speeches, but I did get my point across to the doctors' community and did bring POTS to their attention. And in the end, it was great to see that these doctors got interested and voted the discussion as most valuable to THEM.

Corina, this community is for US-licensed physicians, but I did hear that they are working on letting doctors from other countries join in the future.

[lalalisa]

DoctorGuest,

Thanks SO much for bringing better understanding and even awareness about dysautonomia to the medical community.

Thanks for all of your efforts!! We appreciate you!

Lisa

[DancingLight]

Doctorguest,

May I share your words on my blog? I think your explanation of how much this illness is still misunderstood would be of great help to those who read my blog!

I wanted your permission first though.

My ANS doc was thrilled with Newsweek article and says he'll be handing it out to his medical students! LOL.

Emily

[Sophia3]

Thank you Doctorgues for doing your part to enlighten other doctors!

We all know so many docs in the dark ages....read about them here.

And where Morgan lives, the docs may drive BMW's but their mindset is more worthy of the transportation in this photo. Right, M?

I bet docs where Morgan lives have cell phone ring tones "She'll be Coming 'Round the Mountain When she comes."

[morgan617]

I knew I could count on you sophia! Thanks!

The ringtones are more in the nature of "she'll be going to the psych ward , it's our waaaay. We all know it's make believe, so it's okay....our fragile little egos won't allow for I just don't knows, so she's goin to the psych ward any day."

[sally]

That's wonderful! Your efforts are greatly appreciated!

Thank you for your time.

[lilsagestar]

I have a favor to ask - is it alright if I print out this discussion and take it with me the next time I see my doc? He has a training practice, and the staff there has shown interest in my case. I think if I showed them that other docs (if you won, a lot of docs) are interested as well I might be able to stir up some support in my area.

Thank you for showing dedication to our cause! We "orphans" truly appreciate it!

[Guest tearose]

Thank you for being an advocate!

I hope many will see the information and take it to their practice.

best regards,

tearose

[Rachel]

Wow, that is great!!!

Thanks for sharing.

Rachel