So I’ve been looking back over the last year at the progression of my symptoms, prompted by my car MOT of all things! A year ago I knew I could walk a couple of miles at a time with no problems (that’s how far the car garage is from my home) but now I know that to try and walk that sort of distance, even with a walking pole, would be really pushing my limits and likely leave me done in for the rest of the day. I’ve also noticed that my walking has generally become a bit more unstable so when I got my (first) annual MRI checkup last month I fully expected it to show some deterioration however the letter I got from the Neurologist says that there is no indication of any new lesions so no need for an immediate consultation.
Now this is obviously good news but I’m left wondering do symptoms advance without the need for any sort of relapse occurring? I’m starting to wonder if my new symptoms are all in my head!
I’m in a similar situation with no new lesions but a definite worsening in my mobility. Neurologist just said it was the passage of time. No idea if that’s true or not but not much I could do about it other than carry on with the DMDs (Tecfidera in my case), get myself mobility aids (FES, Alinker, walking stick) and crack on with life!
His newsletters are always excellent - I like the way he’s all for the patients being active in the management of their MS through giving them the information they need, in clear terms, and is also not afraid to say when he is unsure about something, or where more evidence is needed. If only more were like him.
Really useful to be given the information about what is happening at the axon level.
I think you’ll find its very common to worsen over time but scans show no new lesions.
As already mentioned, the damaged nerves would be exposed from previous episodes of Ms attack, myelin does not recover, and those damaged/exposed nerves just deteriorate over time.
I get told the same thing every time I have a scan without anything new but my symptoms are worse, it progression due to time and pre existing nerve damage.
My consultants favourite quote is something like, “if only we could regrow myelin” !
My way of thinking is, use them or lose them.
Ok, the damage is done, and there’s nothing to fix it, but if you can keep trying and pushing , then maybe, just maybe those damaged nerves will just keep trying to push those signals through the best they can, or give up and they might just give up sooner rather than later ?
Just my own thoughts !
I seen this with my sister’s MS, she almost gave up from day one and gradually got worse fairly quickly.
Ok progression in some people will come quicker than others, but you need to push as far and as much as you can.
Yeah I agree with what you say and also re the use it or lose it sentiment! Keep working, keep moving, keep laughing and keep living (in no particular order)! I will not give in to this bastard
