I am a 42 year old woman with a history of LCH but is now dealing with CNS-LCH and will be doing Chemo for the next 12 months.
Here is a summary of my medical history - I woke up from a reconstructive knee surgery in 1989 with Diabetes Insipidus (excess loss of water - inability to retain water AKA "drinking problem" :) pituitary damage was noted later and a migraine that lasted 3 months. Turns out I had a skull lesion sitting on my optic nerve. I had it removed and tested. These were classic symptoms of "LCH" or "Histiocytosis". I was told I couldn't have children, but later had 3. Then I seemed to go into spontaneous remission for a long time. But in 2006, my right arm went numb and my hand was weak. I was gradually noticing changes in my balance, memory, speech and fine motor skills. This was gradual and I was able to adjust and hide it pretty well. Then in the fall of 2009, I started getting migraines - daily. My fine motor skills were suddenly getting worse. When I told my oncologist at my annual check up, she immediately ordered an MRI which revealed lesions on my brain stem and left frontal lobe (hence the numb right arm). Soon after the MRI I developed a chronic acid reflux that has been diagnosed as a secondary side effect to the lesions on my brain stem. Apparently, the muscles in my esophagus are not working well and causing different problems. In this case, these symptoms are being treated by a GI while I will still get treatment for the lesions from an oncologist.
Click Here to go to the official web site of this wonderful 'rare' disease I have. I am 1 in a million they say...and 1% of the 1 in a million get what I now have. LCH-CNS.
I went to see the 'Super Doc', Dr. Kenneth McClain - May 20, 2010!. He is the leading researcher for this condition and has set up a treatment plan for me.
I have started going to MD Anderson in my home town and started treatments in July. .
You can ask me anything, I will talk about it, I don't mind. I am also on Facebook. I just want to help get the information out there for anyone else dealing with the same thing.
