Am I lucky, or is it a matter of time?
I wonder if anyone can relate or share their experience, and I appreciate I may not like the answers.
I feel like I'm escaping major MS related issues. Whether it's medication, lifestyle or just fortunate.
Quick history:
Started with symptoms in 2017 with my left eye not working. Had multiple CT and MRI scans and a Lumbar Puncture. LP showed Oligoclonal bands in my spinal fluid. A major indicator for MS. MRI revealed two lesions on my brain.
Regained full use of my eye after about 9 months. Was discharged with no diagnosis, but highly likely it would be MS.
Had a relapse in December/January 2022 with my left leg not working when skating. Got another MRI scan which revealed a new lesion on my spinal cord.
Got diagnoses of RRMS in March 2022. Started taking Kesimpta the month after, injecting every month.
My main question is this. How long after you diagnosis of RRMS or initial symptoms did your MS start to f*ck around with you?
I would consider myself 100% physically fit and if you didn't know me, you wouldn't know I had MS. Aside from random occasions where I get weird pains in muscles or parts of my body that just "go away" after a while, I'm otherwise, seemingly 'normal'.
Am I on borrowed time? Did anyone else go a while before it really impacted them? It really affects me psychologically because on one hand I feel like "I can handle this, it's under control" and on the other hand it's more a matter of time before I'm f*cked.
Hard to say, Mark. You’ve got some positive prognostic factors there - your first relapse was ON, there was a long length of time between first and second relapse, you were diagnosed before age 40, and you’re on a high efficacy med (similar to ocrelizumab which in a recent study presented at ECTRIMS showed no progression / deterioration in EDSS in over 80% of patients on it over a period of 10 years). Your negative prognostic factors are gender and the spinal lesion. Will you go through your life with MS listed as a thing on your medical record and nothing else? Probably not. It’s realistic that as you age you’ll lose some reserve in the areas where you have lesions. Over ninety percent of patients with MS develop genitourinary issues (because the tract to the bladder is so long and there’s so many places it can be affected) balance, and your spinal lesion/loss of power in the leg means that’s an area that you may begin to develop symptoms. Best thing you can do is build reserve in these areas - PFEs, strength and balance training etc. If you make it 15 yrs without symptoms or relapse, you’re officially termed benign MS but that’s still a controversial term…!
@markmalekpour Luck of the draw. Enjoy it whilst it lasts. I've had my MS for nearly 20 years, it doesn't really affect me apart from the fact that I know I am slowing down. Yes, I have symptoms (mobility, balance, cognitive, spasms) but I've just returned from a holiday in Japan, was clocking up 20,000 steps a day and managed to keep up with my adult children. Still working full time in London. Same as you, looking at me you wouldn't know I had MS. You may find some of your symptoms creep up on you, some come and go, I keep a note of any changes so I can keep a track of any problems that don't seem to be getting better.