Finding Primary Doctors - Muscular Dystrophy Message Board

Madalot · 04-04-2008, 06:49 AM

This is kind of a vent, but I was wondering if anyone else has experienced problems like this.

Four years ago, my family moved from a major metropolitan area (Northern Virginia) to a rural area in South Central Virginia. Obviously, I have Muscular Dystrophy, along with Acid Reflux, High Cholesterol, High Blood Pressure and a major family history of early heart disease. I was able to find a Neurologist at a major university hospital shortly after we moved. I have a two-hour drive to see him, but there's nobody in the local city that would be able to take me on. This is fine and I love my neurologist.

My problem is finding a primary care doctor. I had the most horrendous time when we moved here. I had one doctor tell me that she would not even discuss my MD with me PERIOD. I made a second appointment with her, trying to establish a relationship with her. I told her that I had someone to monitor the MD, but if she was going to be my primary doctor, she had to keep the MD in mind when diagnosing and/or treating other conditions. She wouldn't budge and it became obvious she was not the doctor for me. I tried another doctor who basically threw me out of his office, saying his practice was NOT the one for me. I tried another doctor in the best practice in the city and he refused to take me as well. I got really upset and the woman in his office talked to another doctor in the practice who agreed to take me. That was about three years ago and he and I established a great relationship and I've been very pleased with him. In discussing my issues with finding a doctor, he basically told me that these doctors were afraid of something they didn't understand (Muscular Dystrophy) and that's why they acted the way they did. He just shrugged and said he was okay with it, especially since I had a good neurologist. He and my neurologist kept each other informed. Everything was good and I felt settled.

I found out earlier this week that my doctor is relocating (too far to keep seeing him) and because this practice lost another doctor last year, they will NOT be able to keep seeing his patients.

I really don't know what I'm going to do. So many doctors from the city have left and those that are still there are some that I've already tried and they just aren't receptive to treating someone like me. I called pretty much the last practice in the city yesterday to try to get an idea IF any of their doctors might be okay for me. One isn't taking new patients and one of them she told me flat out would NOT be good for me with my pre-existing conditions. She did say that the last one WOULD be pretty good, but until I meet him, I really don't know. And if he and I don't "mesh," that pretty much exhausts the doctors in the closest city.

I don't know what I'm going to do.

There is a much larger city further away (a good hour depending on where in the city you're going), but I hesitate to move my primary care that far away, especially since it's difficult for me to travel by myself.

Has anyone else run into this type of problem and if so, do you have any suggestions on finding a primary care doctor?

kew17 · 04-04-2008, 10:54 PM

Hey Kathy!
How have you been? I'm sorry I don't keep in touch like I should. Life has been extremely busy on this end. But I wanted to reply as I too have found difficulty in finding the right primary care doctor. I also have been met with some of the same responses as you have and was perplexed myself. After several meetings I found one that I developed a good relationship with until she closed her practice recently. She referred me to a guy in her same building. I can't say I was too impressed with him, but rather I told him how to treat me. It was kinda weird. They both really had no idea what to do with me. With the first one, we already knew that when I get my frequent allergy stuff that almost always turns into upper respiratory infection and sometimes pneumonia, we treat with Levequin. We got to the point that I knew what I had, how to treat it and she'd call in a script for me. The new guy I only met with once and I told him what I needed. I agree that they may have been hesitant and scared to treat me as they just weren't well versed in the area of MD and there are so many different complications. On Jan 1, I started with a Medicare Supplement policy and now have a new primary care that I haven't seen yet. I had to pick from the list. So this should be interesting. I was told by my neuromuscular specialist/MD dr that it would behoove me to have an "internal medicine" specialist as a primary if I could.

I wonder if you contacted the hospital that is closest to you for a list of doctors that have privileges there that they might recommend. My logic here is that should an emergency arise that you need to be taken to the hospital, some doctor there is going to "have" to treat you. I would hope someone there has the knowledge if not expertise to help you. No? I'm just thinking outloud.

I hope you find someone that is caring and compassionate. That is so important. Good luck and keep us informed. As always, I keep you and all our board members in my prayers.
Kelley

Madalot · 04-05-2008, 07:59 AM

Hi Kelley!!

Actually, my initial searching involved using the Hospital's Physician Directory as my basis. Unfortunately, the area we live in is extremely depressed and many of the better doctors are leaving for larger cities with better pay (and hospitals with better reputations). It's really pretty sad.

My current doctor that's leaving, Dr. T, is an Internal Medicine Specialist. As long as nothing serious changes, I have one more appointment with him before he departs and I plan on asking him for recommendations, even if he feels someone further away in the larger city would be better.

I called another practice that has three Internal Medicine Specialists. After giving the nurse the short version of my situation, she said that one of the doctors definitely would NOT be a good choice for me, but one of the other ones would. I will probably try to see the one she recommends, but it's pretty obvious that if he and I don't "mesh" I can't see any of the others at this practice.

I know I sound like I'm exaggerating, but the truth is I'm running out of options in the local city. While I love living in the country with a slower pace of life and little traffic, this situation is one of the "cons" to relocating here. When I lived outside of Washington DC, there were so many choices in doctors that I just kept looking until I found someone. Most of those that are still here I've already tried or if I haven't tried them, their office staff knows them well enough to know that they won't take me anyway with the MD.

I just don't like the idea of having a doctor that's an hour away and uses the hospital that's so far. Ultimately, I may not have a choice. I just find it so frustrating to be back in this search mode again after I felt settled with Dr. T.

Well, I suppose I should try to put a positive spin on this and look at it from the viewpoint that there's something better waiting for me. I just have to look for it.