can langerhans hystiocytosis or acromegaly be hereditary?
I am not sure if I spelled the names correctly. My neice was diagnosed with this disease when she was 11. She had brain surgery to remove a tumor on her pituitary at the age of 12 . Shes had chemo several times over the past several years. I am wondering if I could have something similar . My cousin had acromegaly and passed away at age 35 . There seems to be a lot of pituitary issues in my family. I am wondering if I could have acromegaly as I seem to have alot of the same symptoms.
I am 54 yrs old. female. I also have an enlarged pituitary and enlarged pituitary stalk which deviates to the left, which the Drs suspect is tumor caused but they arent certain. I was diagnosed with that about 4 yrs ago. Ive had about 4 MRI over the past 4 yrs. No change in the size of the enlarged pituitary and enlarged stalk. . At times my prolactin levels become elevated and the Endocrinologist puts me on meds to bring the levels down, She said it could be caused by the enlarged stalk. I have been suffering for 5 years with a mutitude of symptoms. Ive had high range hearing loss in both ears with constant tinnitus ,severe stiffness and pain each night in ALL my joints which last for hours after I wake up,( my GP Dr ruled out Rhum. Arth and Lupus) ) severe insomnia ( I wake about every 15-20 minutes all night long) , no libido at all , enlarged sinus's and enlarged turbinates, extremely DRY eyes, my brow bone , upper lip area , upper jaw area and nose keep getting bigger and seem swollen in the AM., I've developed very oily skin on face, acne, hair loss from my head . My upper eyelids get very swollen when I sleep, my face seems puffy, I am suddenly growing black hair in odd places for a woman ( cheeks, neck, hips, backs of upper arms) also have on and off high blood pressure, on and off double vision, on and off incontinance and loss of control of bowels, occasional tingling in left side of face, occasional tingling in arms, fingers , legs, areas of skin that FEEL like they have been severely burned butthere is no redness..only slight swelling under the skin, my hands, fingers and feet turn bluish and hurt when the temps get cooler, I am hypothyroid and on thyroid meds, , low cortisol levels and low response to cort. stimulation testing, I have gastro issues similar to IBS ,occasional bouts of weakness so bad I cant even stand for longer than 10 minutes or so, was diagnosed 4 yrs ago with Pulmonary hypertension, secondary ( its resolved) heart valve issues, intolerance to warm temperatures( all symptoms become much worse in the heat) cognitive issues , severe short term memory loss , difficulty with words, numbers, my abstract reasoning is gone....I could go on but my fingers are tired from typing. I have been to several specialists who quickly give drugs for symptoms, but I am unable to find the cause behind all my health issues. By the way, I was perfectly healthy 5 years ago. The only problem that I had prior to 5 yrs ago was occasional double vision. I guess that was my first symptom. Sometimes many of my symptoms seem to get better...for a little while, but keep coming back. Lastly, I am depressed...mostly from feeling so awful , looking awful due to the facial changes and hair growth, and not being able to find any answers to my medical issues. When I try to talk to my Endo about my symptoms, she dismisses me with comments like, "your no spring chicken" and " lots of people cant sleep, you just deal with it" What do you suggest? Thank you for your time.
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