Hope you are well
It has now been 1 year since i had my first MRI scan to confirm Inflamation on the brain. I was quickly seen by a MS nurse and also referred to a Consultant at the QE in Birmingham. As it had been over 6 months my Consultant wanted me to have a fresh MRI of the Brain and the Spine.
The results have confirmed that some lesions have got smaller on the brain and some new lesions have appeared on the Spine. I myself feel perfect and continue with my day to day. I do sometimes get the odd pins and needles but I am starting the question is this not normal with everyone ?
My letter has also confirmed that due to my results my Consultant would like me to start on DMT. My case is being discussed with the care team over at QE and they will get back to me ASAP.
After looking online there is a lot of treatment out there, I was wondering for someone who is at clinically isolated stage is there anyone else who has started treatment ? Which drugs do you use and also do you get any side effects from this ?
I was first told that as my condition is not bad they may let me carry on without any drugs but from my previous scan it seems things have got worse. It was also mentioned that there is 30+ lesions on the brain ( I am not sure how many is normal)
Quite scary and also sorry for all the questions.
HI Andy, welcome to the gang.
I think you are fortunate in that your MS is mild.
I am wondering what happened to make you need the first MRI?
Yes, there is a vast myriad of DMDs available. Not had any myself as I have had PPMS for 24 years.
I wish you well for the future.
Thanks for the reply
With myself it was shocking and strange. I went for a walk at 7am and noticed something is not right. My Body kept moving to the left and I had to almost think how to take my next step. It was strange and at first I thought it was too early and I was still in sleep mode
The same Day i continued with my tasks including going on a ladder to replace some lights. The next day I noticed things are not right, My wife said I should ring 111 who then said get to A&E now. A&E took a look at me and said I seem ok as they checked heart etc, At the very last minute they said we should keep him and they put me on the stroke ward. I was then on the ward for 5 days and they first said that Iv had a stroke then after a repeat MRI they said its not a stroke and its inflammation on the brain. Thats how it all started. Im 33 and never had anything like this before
The normal number of lesions in the brain and spinal cord approximates to zero. More, and that’s trouble. There is no such thing as mild MS: MS that mild one day can cause major and permanent damage the next.
When I was diagnosed 20+ years ago I couldn’t get on a DMD fast enough. It was only Avonex because that’s all there was in those days. If instead I had started on Tysabri then instead of 10 years later, I would probably be a lot less disabled and a lot less stupid than MS managed to make me in that first damaging decade.
All that is water under the bridge for me of course. But for young people starting to navigate these waters I always recommend getting on the most effective DMD that your neurologist will approve and do it fast. Once the brain damage is done, it’s done. so doing everything you can to stop the damage happening should be your priority.
Thank you for your reply
regarding the number of lesions i thought that might be the case that anything over 0 is dangerous
At the moment I feel fine (I think) but there is no hiding that there is activity taking place in me.
Also thank you for your feedback on the last paragraph, I have since called my MS nurse and he had arranged to follow this up with the consultant and has said he will book me into a appointment with him for us to go over options once the Consultant has come back to him. Things do seem to moving along now.
That’s good to hear, thanks. I am sorry that you are having to think about these things at all and hope that all goes well for you.
Hi again and thanks for sharing what happened.
Best wishes and love Boudsx