Searching for Doctor

[Kim81769]

Hello everyone, I am new to group today and have been diagnosed with IGM, I am desperately seeking a Dr who has experience in treatment, I live in Northeast Ohio but am willing to travel.  I have a team of doctors which include Breast Surgeon, Infectious Disease, Rhuem, Allergist, General Prat, that honestly are stumped in treatment for me.  I have had no relief from Steriod treatment and reocurring infections with new absecess and now i have new abscesses in my elbow area.  Any suggestion I would GREATLY appreciate, Loosing hope fast :(

[Kim81769]

Thank you so much for the info, very interesting!

[pregnantandfrustrated]

Hi Kim, I literally called around town to see if any rheumatologists had seen this and if they accepted my insurance. Was hoping for a female, since everyone I had seen prior were male, and I was tired of feeling misunderstood. With God's grace, I found one. I live in San Diego. She had seen GM before, but on older patients also struggling with other inflammatory issues. She put me on hydrochloriquine (brand name, Plaquenil). It is an anti-malaria drug, that for some reason works for GM. It is less harsh than steroids or methotrexate. I haven't had an abscess since July. We are uncertain for sure if it is the medication working or if my hormones just regulated because I was diagnosed while pregnant last fall and had my baby end of April. Hope this is useful to you. Since my TB skin test is positive, she referred me to infectious disease to rule that out as well. Good luck!

[Sush560]

I would suggest finding authors of papers written on GM and the type of case you have and search for doctors through them. Even they ( authors who are doctors)  might be nearby.

[Kim81769]

Thank you so much fo the links and info definately going to reach out to both:)

[kuulei04]

Hi Kim, I personally don't have a recommendation for you, I live in Hawaii and there are pretty much no doctors that have experience with treating GM here, that I know of.  But through reading past posts there is mention of doctors with experience.  Please read through the past posts, I think you'll learn a lot about GM.  And do not give up hope, we will all overcome this obstacle in our lives, we just need patience and to listen to our bodies and give love and nourishment to ourselves.  

Here's the links:  http://www.medhelp.org/posts/granulomatous-mastitis/A-Doctor-I-Recommend/show/1933333

http://profiles.utsouthwestern.edu/profile/77821/roshni-rao.html

And I believe there is also mention of Dr Laya of Seattle

I hope this helps!   Until then, take care and feel free to ask questions!  We learn from each other with this disease.