- May 15, 2018
- West Chester
Hi All - It has been awhile since I posted anything, although I read other's posts often and have received great advice. My sister's motor neuron progression has been significant over the past year. She is no longer able to stand or move her legs, and her arms/hands are very weak (e.g., she can no longer write her name or turn pages in a book). Despite this, she has been very courageous and continues to keep a positive attitude. However, the one thing that has been a major problem is that she has had increasingly severe, systemic pruritus for the past six months.. Even though she has limited mobility of her hands, it is so itchy that she manages to scratch her arms and wherever else she can reach until she bleeds. She has seen nurses/doctors, but no one had a reason (I think they thought it was psychosomatic). I got Benadryl and all types of OTC topical ointments, which she said helped "a little". Finally, one of her nurse caretakers (who talked to his brother, a physician, about her) suggested a liver work-up (thinking cholestatic pruritus) and started her on cholestyramine. They are doing further blood work (e.g., check for primary biliary cholangitis, etc.), but the reason I am posting is that her arm and hand motion has improved dramatically (in addition to much less severe itching). Two weeks ago, she was barely able to lift her hand to her mouth to eat, and now she is raising her arms up over her head. It is dramatic and I wanted to see if anyone else on this site had heard of any situation like this. I am not expecting a miracle, but if she can read a book and use her hands, even a little longer, I feel like some of my prayers are being answered. Thanks for taking the time to read this message.