Hi I have been diagnosed with CIS. Waiting on a lumbar puncture… Would like a chat with someone locally in same boat…
Lumbar puncture next week. Back to consultant in 6 weeks Told results of Brain & Spinal Cord MRI is keeping with diagnosis of MS
Hiya Helen - Northern Ireland here as well - our waiting lists are horrendous here so good luck. Stephen
Hi, so I was told the news four days ago that I have relapsing MS - probably have had it for 20 or more years - I’ve had bouts of uveitis, stiff back, vitreous detachment and fatigue - not pleasant, but all very manageable. What I want to ask is if anyone is in a similar situation as me? ie gone through decades not knowing they have MS. And also, I would really love to hear from anyone whose MS is not ‘too bad’ - if that doesn’t sound too trite, or at least isn’t too impactful on their life. I have yet to start treatment, so maybe I am being too positive/hopeful?
It’s a lot to take in, isn’t it? I was diagnosed in my early 20s and this was 15 years ago. I thought life was over and I’d be in a wheelchair etc within years. I was scared stiff… I’m nowhere near a wheelchair. In fact, I’m climbing mountains and work full time, raising my children. You wouldn’t know i had MS if I didn’t have MRI evidence plus occasional brain fog I’ve been put on mavenclad after tecfidera stopped working and this was only shown on my scans plus two episodes of nerve pain. So yes, i feel very well 15 years on… Hope you are going to have a manageable experience too. Katy
Katy, thank you so much for this positive message. Really means a lot. Diagnosis is a lot to digest and I’ve done a bit of grieving for ‘my old self’, but I have two kids and a work trip to Africa next week, so plenty to look forward to. Thanks again.
Also from Northern Ireland, had MRI three weeks ago still awaiting results…