I’ve been dealing with odd symptoms since 2013 which started with burning/achey/squeezy pain on both knees and inner/on top of thighs. Seems to get worse for a period of time then feels somewhat better but always kind of there. The burning nerve pain that I have can be triggered by pants touching it, bed covers, cool air etc. Also have leg twitches primarily in my legs.
Other symptoms I’ve had are where my right thigh feels stiffer than my left. My right legs feels a little less fluid than my left. Also feel like I have slower visual processing after exercise or if it’s hot out. Not blurry but feel like my brain is moving slower. The burning leg pain has been intense recently, making it harder to sleep. Also have some burning in right shoulder to a lesser degree.
I’ve had brisk knee reflexes but my neuro doesn’t consider them abnormal or pathological given they’re symmetrical. I’ve had MRIs of brain and spine in 2013 and 2020 which came back clean. I still have MS concerns and am wondering if could be an early presentation that hasn’t met diagnostic criteria?
Things continue to get ruled out and I’m worried the lesions just aren’t showing yet or too small to be picked up. Does this sound like trending towards MS? Any thoughts are appreciated.
Hi Rivers. Sorry to hear about your experiences. I don’t think any of us can say if they are trending to MS. I suppose it’s just vaguely possible that you have small undetectable lesions but your guess is as good as mine. You would need to ask a neuro about that . In my case and from what I know lesions are quite obvious
Did you have an MRI with contrast? Contrast picks up a bit better than a standard MRI. Your symptoms could be down to lots of things. Asking for broad spectrum blood tests could pick up vitamin or other issues. Take heart that so far your results are ok I know it’s so frustrating feeling poorly for so long with no answers. I hope you get to the bottom of it soon!
Yes the two sets of mris in 2013 and 2020 were both with and without contrast.
I’ve had a battery of blood tests. Originally had low vitamin D which was corrected in 2013. Had two positive Ana test which were 1:320 and 1:640 homogeneous. Had the full autoimmune panel which came back negative.
Really don’t know where to go from here and the possibility of MS is constantly on my mind. The not knowing is very difficult for me.
I can defo relate to that nagging feeling something isn’t right! I wish I could say what about this what about that and you’ve already been put through so much!
I would say you know your own body so never stop advocating for yourself. x
I went back to my neuro and he gave me another T and L spine MRI given the knee reflexes were brisk however symmetrical along with the burning pain. I’ve also recently noticed burning pain in my right shoulder, similar to the pain in my thighs/knees.
The T/L MRI came back clean. Should I push for another C and brain MRI? I’ve had brain, C, T, and L mris in 2013 and 2020. Additional T and L MRI in 2025.
Still concerned there could be subtle lesions that weren’t picked up or it’s early? Am I off base?