I’ve not used any sort of forum before, so a little nervous about posting in here, but hopefully (after reading so many useful threads) there will be a little advice.
I was diagnosed with MS in Dec 2017 after a few months steady decline in walking, gripping and my eyesight. I had put off going to the doctors for so long that by the time I did, my GP immediately advised me to go to A&E and I was admitted more or less straight away. I received a week of excellent care from everyone, with MRIs, a lumber puncture and Neurologist visits, which meant my diagnosis came around quite quickly and I’m very appreciative of the instant tests I received. I know a lot of people have to wait a long time for these, and even longer for a diagnosis.
After a couple of months of steroids I was more or less back to normal physical health, and did all I could to avoid thinking about MS. Around August/September of last year that came crashing down and I suffered with anxiety and constantly felt depressed, I took time off work and saw my doctor who put me in touch with a councillor who was really helpful, though all too brief. I also had a relapse in that time which is much less severe, but MRIs have concluded there are more lesions. After a disappointing hospital trip in December last year and another just last week, I’m starting to struggle a little more. I wondered if anyone had any advice on coping with the uncertainties, and the fear of the burden placed on those around you (e.g. my boyfriend and sister who I live with who give excellent support)? I constantly feel guilty in case I complain of pain or tiredness too much, and worry about the future my boyfriend is letting himself in for!
I am (lucky to be in a way I guess!) eligible for the infusions based on the relapse and new lesions, and after lots of research decided to go for Ocrevus, which has a 6-8 month waiting list. As grateful as I am for the availability of the treatment, I was hopeful to remain on Capaxzone as it doesn’t affect the possibility of having children. With Ocrevus, taking the waiting time into account our plans have been pushed back most likely by just a couple of years (I know that’s a small price to pay!), and I wonder if anyone else has been in a similar situation? I am keen to escalate my treatment after strong recommendation from my Neurologist, I know I’d always want to know I’ve done all I can to make later life a bit better. However I’m struggling with the concept of life being on hold, and have (as with everything online) read some horror stories about the infusions, so after a little reassurance if anyone has had Ocrevus treatment?
I hope anyone reading is keeping well, and thank you for reading through my sob story!