I have Langerhans cell histiocytosis of bone

I had a tumor removed from my left frontal lobe in the bone. None of my doctors know anything about my disease nor do they care enough to find out. So in looking at the MRI from four weeks before my surgery I found that there was also a single FLAIR hyperintense focus present at the left basal ganglia. Also I have a swelling over my mastoid which is an indicator that I have a lesion or growth on my temporal bone. My problem is that my doctors have completely ignored and dismissed my questions about these things. I think the problem is that they dont want to admit that they dont know or they just dont care enough to put the effort into finding out. I dont want to wait until these things have gotten so bad that I have to under go brain surgery again and have part of my dura removed. How can I find a doctor who gives a damn about me?

[Augie_G]

My comment was deleted.  Email me and I will share some resources with you so that you can get help in treating your disease  My email is histio.***@****  I am currently working on a list of drs familiar with LCH for the Histiocytosis Association.  If you give them a call they can help you find resources in your area.  Also, I recommend reaching out to Dr. Ken McClain.  He is an expert in LCH.  His email is ***@****

Also, if you email me, I can put you in touch with hundreds of others with Histiocytosis.

[Augie_G]

Grr This site doesn't like me.  Let's try this: histio (dot) volunteer (at) gmail (dot) com