Pandora, I'm really sorry to hear this : (
I was referred to a rheumatologist who also had never heard of this disease, and I wasn't even able to get past the person who answered the phone and said he wouldn't see me. This is one of the primary reasons that I stopped going to the doctor - because no one knows what to do for us. I'm not interested in taking steroids or chemo, I'm not going to have surgery...and so, they just don't really have anything else to offer.
I do have an appointment to see the NP at my breast specialist's office next week. I haven't seen anyone about my breast since last October. I thought maybe I should have ultrasound, or some type of diagnostic screening, although I'm not sure why. I doubt that they will be able to tell me anything new.
I also saw my primary care last week about my weird burning scalp sensations, vision problems, ringing ear, etc. I was very concerned that those were symptoms of something else...I even thought I might have a brain tumor : ( I had an MRI, though, which was negative. I am still waiting for results from blood work, including prolactin levels. It is definitely good news for these tests to not show anything...but it still leaves me guessing, which is definitely stressful. So....
Well, we are all in the same boat. I am sorry that you are having to go through this. Thanks for listening : )
I wanted to add that I considered going to the Mayo clinic as well. I have heard about quite a few medical miracles happening there. I looked into it, but they are very selective about what insurances they accept. Mine wasn't one of them, and it was going to be SEVERAL thousand dollars out of pocket to be seen - they charge several hundred dollars per slide just to review MRI, mammogram, and biopsy results. Such a bummer : (
Really sorry to hear this Pandora.
I had a couple of really bad experiences when I was first diagnosed and VERY SICK, trying to find a rheaumatologist to take me. I remember breaking down in tears in the office of one who had taken me on 'because she felt sorry for me', but then when I presented in full flare, she was completely overhwhelmed and kept saying I am a joint specialist this is not a rheumatological issue - which of course it is...and I had to go back and find another rheumatolgist. Happened three times before I found someone who would accept me as their patient and do what they could do to help me. Not really acceptable.
Sorry that this is happening to you (us).
If, if, IF you can get to the Mayo Clinic, do it and do not look back! There is a terrific Breast Specialist in Rochester, MN at Mayo named Dr. Pruthi. There is also a terrific rheumy there (can't remember his name right now) who will work with Dr. Pruthi to come up with the right treatment for you. I went to Mayo, recieved the absolute best care I had ever received, and then my insurance co decided they wouldn't pay for it after all (long, stupid story). Anway, I really think that had I been able to stay seeing Dr. Pruthi, I would have been treated property right away.
Thank you for the kind words and names. I might persue this. I am weaning of Prednisone right now. I still have lumps. If they begin to flare and abcess again...I will definately go that route.
What did Dr. Pruthi do for you? Please tell me what his treatment did for you.
I have an abcess on my inside of areola and causing lots of pain.
The biopsy incision on opposite side open for the 5th time and oozing again!
If anyone can please let me know... how to use the healing clay and how to prepare and apply direct to skin or not?
My experience of an abcess and how it developed for me. It's an inflammation in the breast that will blister on it's own then break open and drain. My breast was very painful prior to the drainage. My biopsy incission was the easiest exist for mind to drain from. Not sure what to do on my other abcess developing on opposite side and very painful and no exit for it to drain. Mind also is developing the same time as my menstrual period...have to think this has something to do with IGM! My periods have been irregular.
I answered your question about the healing clay a few days ago. If you scan back to your post from June 24th, you can find the answer there. Hope that helps.
Don't be afraid to just pinch it. If the incision site is still there....just push the puss out the incision site. Very gratifying.
My kids pediatrition knows a Rheumatologist. Since she is also my friend she called him for me and talked to him about my condition. He told her he had see one or two cases in his many years of practice. He treats with Methotrexate, because it is what granulomatous conditions respond to. He agreed to take me on. I called and got an apt. on the 6th of July. My surgeon is thrilled. Before I sign the release, I want to make sure she knows she needs to still be my Dr. for surgical needs.
Needless to say, I have gotten comfortable. It is really scarey to think about handing the steering wheel over to someone else. Anyway....there is hope.
Glad you are seeing someone with a bit of experience.
Others on the board have gone the methotrexate route - Amy comes to mind...Let us know how our app't on the 6th goes.