I have not been well for a couple of years and if I don't hear it from one of my specialists I don't believe it. My PCP ........I don't want to say he is stupid, because he isn't, he just does a quick well check and refers me to specialists. Specialists that may or may not be competent. Over the past couple of years I have lined up some cutting edge doctors. There was a lot of trial and error, but I live close enough to Dallas that it attracts the cream of the crop. God help me if I was from the sticks.
This is a rarer disease [I don't buy the 11 percent number thrown around] especially in higher stages.
so it can be hard to find specialists.
http://www.lipomadoc.org/
I'm still wanting to pursue an official Dercums diagnosis, [My Lipedema Lipo-lymphedema is diagnosed officially] but having a difficult time myself. Don't have money to travel to see Dr. Herbst in Arizona.
I am glad you are getting better, and found good doctors. If I didn't move out of my rural town, I probably would have never gotten the lipedema diagnosis. There wasn't any lymphedema treatment there and it was so far away it was too difficult. I realize I have two disease on the rare diseases list, that is a bit much don't you think. Don't know if Meniere's is considered rare too. It's getting to the point where it'd be easier for me to list what isn't wrong. I hope you get well soon and it is something they can get control of. I meet doctors all the time who have never heard of PCOS or Lipedema.
I have not been well for a couple of years and if I don't hear it from one of my specialists I don't believe it. My PCP ........I don't want to say he is stupid, because he isn't, he just does a quick well check and refers me to specialists. Specialists that may or may not be competent. Over the past couple of years I have lined up some cutting edge doctors. There was a lot of trial and error, but I live close enough to Dallas that it attracts the cream of the crop. God help me if I was from the sticks.
ReplyDeleteHow can I find a doctor in Dallas who specializes in lipedema?
DeleteFind an MLD therapist they often work at cancer centers, this is how I got diagnosed backed up by my other doctors.
Deletehttp://www.fatdisorders.org/society/doctors/doctor-directory
This is a rarer disease [I don't buy the 11 percent number thrown around] especially in higher stages.
so it can be hard to find specialists.
http://www.lipomadoc.org/
I'm still wanting to pursue an official Dercums diagnosis, [My Lipedema Lipo-lymphedema is diagnosed officially] but having a difficult time myself. Don't have money to travel to see Dr. Herbst in Arizona.
I am glad you are getting better, and found good doctors. If I didn't move out of my rural town, I probably would have never gotten the lipedema diagnosis. There wasn't any lymphedema treatment there and it was so far away it was too difficult. I realize I have two disease on the rare diseases list, that is a bit much don't you think. Don't know if Meniere's is considered rare too. It's getting to the point where it'd be easier for me to list what isn't wrong. I hope you get well soon and it is something they can get control of. I meet doctors all the time who have never heard of PCOS or Lipedema.
ReplyDeletegood for you.
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