Hi all,
My sister has been diagnosed with neurosarcoidosis recently after months of tests.
She had sarcoid in her lungs which was diagnosed 3 years ago and she subsequently recovered from.
Her balance got very bad around this time and at present, she is actually not mobile at all at the moment. She has lost a huge amount of weight as one of her symptoms was vomiting all the time. She also has sarcoid in her bones.
She is being treated with infliximab which is being administered by IV every 4 weeks.
We are very worried about her at the moment, she is house bound and very down about this illness and the effect it is having on her body.
Can anyone share what treatment was used effectively on them? We are in Ireland and there does not seem to be much awareness of this awful disease here.
She is waiting for a bed in the national rehabilitation hospital at the moment where they are hoping to build up her strength with physio/occupational therapy.
Any advice would be greatly appreciated.
Thank you.
I was diagnosed with sarcoidosis in October 2013 after months of feeling very ill with chronic fatigue, weight loss, hot and cold sweats, undescribable pain in boned and body, re current bells palsy in my face, liver and kidney malfunctions you name it I had them all. Although I was initially diagnosed with systematic sarcoidosis I have since developed neuro sarcoid, pulmonary sarcoid, its also in my liver, kidney, eyes and has triggered off gluacoma leading to me having 2 eye surgeries, my blood pressure is constantly really high, endless twitching, body parts moving on their own, cramps and spasms the list is endless.
I've been treated with methotrexate and cyclophosphamide both chemo treatment and both has failed. I am now on infliximab and in my 4th month of being treated with it and don't feel any better. I am practically house bound now as in too much pain to walk. My body feels like a large piece of brick that I'm am trying to move, detached but accompanied with searing burning pain. This disease is the most awful thing anyone can imagine. I don't know whats ahead now, the past 2 and a half years have been living hell.
Hi thisandthat and welcome to Healthypages,
I can't claim to know anything about your condition or what you must be going through, but thought I would at least be the first to welcome you.
🙂
All Love and Reiki Hugs