@BL91 

EditedLast reply

BL91

Awaiting treatment

Hi everyone! I was diagnosed with RRMS September last year after a year of just not feeling right always falling over then loosing vision in my left eye after MRIs that’s where I was diagnosed! 26 lesions on my brain a very large lesion on my left lobe. Also 4 lesions on my spine. I have struggled a lot with the diagnoses as it turned my world upside down but I’m starting to carry on with life as normal as I can. My treatment of choice was tysabri but I was unable to have it due to having the JCV virus so now I’m going for ocrevus, Iv had lots of blood tests filled forms ect and I’m still waiting it’s been around 5 months now and I have had a few relapse since then I feel like I can’t move on with my life until I start this treatment. Has everyone else had to wait a long time? #ocrevus #mentalhealth
@Vixen

Hello @BL91, sorry you're going through this. The timing is unfortunate too, as Covid has put massive pressure on the NHS, causing delays all around. You could look at the option of moving to another hospital, which is the right you have. It's very positive that you're trying to get back to a 'normal' life. Most of us would tell you that it probably takes about a year before you understand what 'the new normal' is. Focus on recovery and try to live as healthily as possible. Try to exercise but don't push yourself too hard. It's sometimes tempting to push yourself just to prove that you can still do things. Also, Ocrevus is just about the best there is at the moment, which is a huge plus. If you want to look at your situation in a more positive context, know that when your parents were young, there were no treatments at all, no DMDs, no MRIs to diagnose, so often diagnosis could take decades. There is more on the horizon for us all the time, with lots of breakthroughs, so stay strong x

@BL91

Thankyou for your reply! Around 5 minutes after I posted this the hospital rang me to tell me my first infusion is the 16th March so I feel rather silly now lol! I find I am doing that at the minute trying to go 100 miles an hour like I used too and I don’t half feel it now! But I’m trying to stay positive or I could easily just go down the rabbit hole. Iv found the MS community is so kind though in that way I feel very lucky! Xxx