Please Help! Looking for Rheumatologist in Houston TX

[hailey108]

Hello Everyone! First of all, I just want to say I'm so glad to have found this group and know that I am not alone in this battle against this disease! I was diagnosed with GM 6 months ago when I was 5 months pregnant. My gynecologist said he had never seen or treated anyone with GM and referred me to a breast specialist. The breast specialist said since I was pregnant all she could do is drain any abscess that appeared and once I had the baby she would refer me to a rheumatologist for treatment. Everytime I asked questions I was told "I dont know", there is nothing more frustrating and scary than doctors telling you they dont know much about this disease.I did research on line but not to much info out there on GM. So my understanding was after I had the baby I would receive "treatment"  and this would be put behind me. Boy was I WRONG! Three weeks after I had the baby I went to see the rheumatologist and he has never treated anyone with GM. He prescribed me prednisone 5mg and said lets see how much improvement we see. When I asked how long I would be on it he said he didnt know, maybe 6 months depending on how you do. Are you kidding me????? You want me to take this drug for 6 months and lets see what happens??? I need to find a doctor who has some experience treating GM and has an Idea of what to do. I am feeling desperate and frustrated. Please help if you know a Doctor in Houston or surrounding area. Looking forward to any direction. Thanks!

[hailey108]

Thank you both for responding!  

Pandora I agree the breast specialist has helped me the most in managing the disease. I think what the hardest part for me was accepting that this was a chronic disease that I'm going to have to live with. I am limited to the amount of time I have to research being that I have a newborn that keeps me busy. But I have read several people on here mention the anti-inflamatory diet among other supplements to help ease the flare up's and pain. Defenitely something I am willing to look into to start.

JoJo, Thank you so much for the info I will look into it and see where it takes me! Will keep you posted.

[JoJo45]

Here is a link to a recent article on GM with one pathologist linked to Anderson Centre in Houston - you might start there and just start asking around, ask them to refer you to a breast specialist or rheumatologist affiliated with the care of the cases they studied.   I am sure they would be happy to hear from you...we are interesting!

BMJ Case Reports 2011; doi:10.1136/bcr.07.2010.3156
Reminder of important clinical lesson
Recurrent granulomatous mastitis mimicking inflammatory breast cancer
Ahmet Bahadir Ergin1, Massimo Cristofanilli2, Hamed Daw3, Gulgun Tahan4, Yun Gong5
- Author Affiliations

1Department of Internal Medicine, Fairview Hospital, Cleveland, Ohio, USA
2Department of Medical Oncology, Fox Chase Cancer Center, Philadelphia, Pennsylvania, USA
3Department of Regional Oncology, Cleveland Clinic, Cleveland, Ohio, USA
4Department of Human Resources, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA
5Department of Pathology, M.D. Anderson Cancer Center, University of Texas, Houston, Texas, USA
Correspondence to
Ahmet Bahadir Ergin, ***@****
Summary
Granulomatous mastitis (GM) is an uncommon benign breast lesion. Diagnosis is a matter of exclusion from other inflammatory, infectious and granulomatous aetiologies. Here, we presented an atypical GM case, which had clinical and radiologic features overlapping with inflammatory breast cancer (IBC). The disease had multiple recurrences. The patient is a 40-year-old Caucasian woman with a sudden onset of left breast swelling accompanied by diffuse skin redness, especially of the subareolar region and malodorous yellow nipple discharge from the left nipple. The disease progressed on antibiotic treatment and recurred after local resection. A similar lesion developed even after bilateral mastectomy. GM may show clinical/radiologic features suggestive of IBC. Multiple recurrences can be occasionally encountered. GM after recurrence could be much more alarming clinically. Pathology confirmation is the key for accurate diagnosis and a multidisciplinary approach is important to rule out IBC.


Here is another link to a teaching centre- specializing in autoimmune:

http://www.uth.tmc.edu/schools/med/imed/divisions/rheumatology/index.html

If these don't work, let me know and we will find you some more

hang in there - Jo

[Pandora1962]

Hi Hailey and WELCOME! I am sure as you pour over this forum you will find many of us in the same boat as you. I do hope you are able to find some help from doctors. However, but not many of us have. Actually the breast specialist offered the most help of all. Many of us find that fine needle draining the abcesses as they flare up, guided by ultra sound, really is the best way of managing the disease. Read a lot of these girls stories. You will find many ideas to help you along. Start with the one titles "How is everyone doing?" because this one is the most helpful. But move one from there. I think I read this every night for at least two weeks. I learned a ton about the disease. I just started taking some pro-biotics from the health food store. They are expensive, but they introduce good bacteria into my system, which 6 rounds of anti-biotics has pretty much wiped out, and even though it won't cure GM, I believe it will boost my immune system and strengthen me for the fight. I have also started an anti-inflamatory diet. Many of the girls find this helpful. I googled it and found a visual pyrmid that I keep on my fridge for guidance. I find great encouragement from these women. My story is journaled on my profile page, so go ahead and read it. Ultimately, you will be taking charge of your own treatment because there is a definate lack of experience out there.
Oh, And you will find a great description in plain english about what is going on in your body in answer to Clarep34s question "What can I expect?" written by JoJo.