Any experience of Primary Progressive MS, Crohn’s disease and HSCT
Hi everyone. My Husband recieves his lumber puncture results next week but we have already been told that he has PP MS and is EDSS 4 - so just waiting for the confirmation of diagnosis. Because he also has Crohn’s (ocrevus not compatible with Crohn’s) we have been told there are no standard treatment options but may be able to consider HSCT on the NHS if his next MRI shows activity or new lesions.
He is 45, still working (semi office based) and we have two pre-teen children. I really want to help support him and our family. If anyone has any advice or experience regarding HSCT for PPMS (whether active or not) I’d appreciate your views. If he doesn’t qualify on NHS we’ll consider trying to raise the funds privately if we think it will help with his quality of life. We are London based. Thank you in advance.
Hi, I have Ulcerative Colitis and MS but with RRMS and am also UK. Due to JCV positive I couldn't have Tysybri and in the end had Ocrevus. I had been warned it could make my UC worsen but neither my Neurologist and Gastroenterologist could agree on anything so I went ahead. Its a hard choice to make but ultimately I don't want the MS to progress and I kinda think IBD flares can be caught and treated without irreversible damage(fingers crossed 🤞).
@youngatheart thank you so much for sharing that… it’s really helpful. Good luck with your treatment.