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Diagnosed With Langerhans Cell Histiocytosis

Hello Everyone,

I thought I would reach out to others that have this rare disease. I was diagnosed about a year ago and have been very fortunate to have experienced only skin lesions at this time. I find myself more frustrated that my doctors have no experience dealing with this disease and seem to be almost clueless when I have questions. I find myself questioning when I have headaches and bone pain....I am terrified of voicing the pain that it could bring to light something more than arthritis or a migraine. Has anyone here experienced the skin lesions?
cshanley78 cshanley78 31-35, F 4 Responses Feb 2, 2013

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I know I'm late to the group but I was diagnosed about three months ago at 21 with a tumor inside my right shoulder blade and on the bottom of my right foot. I feel like my doctors know nothing about this despite being specialist's. I'm currently at Montefiore in NY and am a little freaked out. My doctors drilled into my shoulder to biopsy and are hoping the hole will allow my immune system to take care of it but its not working. Any one know any more than my doctors about what this is?

Hello everyone. I was diagnosed at 39 with a tumor in my femur - thought i had pulled a muscle from too much yoga and pilates... Great doctor at sloan, 2 major operations. Rod and pins in my leg, rehab for 6 months, radiation which threw me into early menopause...depression and trying to figure out where to go and help others as i feel like my life and a changed perspective on life has helped and also hindered me moving forward. Moments of clarity and then would love to find a support group. Thank you.

My fiancee was diagnosed about a year ago also. He had horrible headaches but they seem to get better after the chemo treatments and chemo pills.

I have been diagnosed just november of 2012 and have had bone lesions for ten years no one new what was wrong with me now its in my lungs and I have been diagnosed with this. Seems to be set on by smoking so I've stopped. waiting for check up in march with Dr.
Now I have had a headache for 1 month and my ears feel like they are blocked not sure if related or not