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Posted on 18. June 2010

Meeting Your Medical Match

By Trudie Mitschang

For much of my life, I never gave much thought to choosing doctors. Often I simply picked a name at random from an insurance directory. But, when I suddenly found myself suffering from mysterious pelvic pain 10 years ago, I quickly discovered that finding a physician who could provide an accurate diagnosis was not just difficult, it was next to impossible. Over the next two years, I was misdiagnosed half a dozen times - I had everything from Lupus to run-of-the-mill stress. At a loss, a few doctors deduced it was “all in my head.”

Stubborn by nature, I persevered, eventually meeting a doctor who did more than listen - he actually heard me. Better still, he took action, swiftly diagnosing my disorder and sending me to a colleague who fixed it. Why, I wondered, had so many other doctors missed what he identified so easily? Was he just a better doctor? Maybe. But I think the lesson for me was that when it comes to my body and health, I will always have to be my own advocate. If a diagnosis doesn’t sit right, I’m not going to accept it. I know that many of our IG Living readers have come to the same conclusion.

So, when looking for a physician, how do you find your “medical match”? A hospital in Dallas, Texas, is currently offering a “speed dating” style program for physicians and patients, pairing new moms with prospective pediatricians. Of course, if you need a qualified neurologist or immunologist, speed dating may not be the best approach.

Back in the day when I was looking for a specialist, Web research wasn’t available (I found my match in the Yellow Pages!). Thankfully, you can now locate a doctor in your zip code at the click of a mouse. Some websites our readers have found helpful include:

     • American Academy of Allergy, Asthma and Immunology 
     • The Clinical Immunology Society 
     • American Academy of Neurology   
     • American College of Rheumatology

Another option is to visit support websites and ask other patients for referrals. Ask them what they like and don’t like about their doctor. Get specific.

Of course, once you find a candidate, you will likely spend most of your first consultation answering questions. What I learned from my experience is that in order to feel empowered, it’s helpful to come prepared with your own list of questions. Some good ones for IG patients to ask include:

     • How many immunology or neuropathy patients does the doctor treat?
     • How does the doctor feel about homecare or clinic infusions?
     • Do they communicate via email?
     • If you are hospitalized, will the doctor consult or come see you?
     • How involved are they with insurance problems? Will they fight for 
       you or are you on your own?

In these days of impersonal medical groups, insurance bureaucracy and what I can only describe as a steady decline in patient-centered care, simply finding a good family doctor can be daunting; locating a specialist who understands IG-related issues can definitely feel overwhelming. Still, there are good - even great - physicians out there. The trick, obviously, is finding them.

How about you: Have you found your medical match? Tell us about your journey. What advice would you offer others?

Categories: Need to Know

Comments (4) -

mark in cleveland
3:59 AM on Tuesday, June 22, 2010

The list of questions is great. Excellent article

10:21 AM on Friday, June 25, 2010

It took me 10 years after being diagnosed, but thankfully, I did find my medical match!!!!  (He is the Division Chief of the Allergy/Immunology Department at a prominent Boston hospital)

The best advice I can give someone is BE PERSISTENT. You HAVE to be your own advocate.  Don't let doctors "blow you off" - keep asking questions, and insist on any relevant diagnostic testing until you get answers that makes sense.  Keep fighting the insurance companies to get any/all diagnostic testing you may need!

Maggie in Michigan
9:09 AM on Saturday, June 26, 2010

What ideas do you have for persons who have  just been told they

must self-cath for the rest of their life because of multiple

UTI  infections?   Some of the doctors say you don't even need
to be that careful of getting a the surrounding territory cleaned up?
territory cleaned up and keeping it cleaned, making sure
you have a  place to measure, etc.  I have been on immune
globulin now for about 3 years; and of course, everyone has
their own ideas to help you, particularly those who have
never had an infection in their lives. Any ideas?  Maggie

8:35 AM on Wednesday, June 30, 2010

I agree!  Be persistent!  Learn to trust your instincts regarding the healthcare people you are dealing with because when you find the right fit it is wonderful. It took years to find my "medical team" and I am thankful for all of them.

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