Here for support while I wait..,

Hey everyone. Edit: The short of it is I was under neurology in 2021 and have some periventricular lesions on my brain MRIs, but no noticeable progression over that year and a negative lumbar puncture. They said they weren’t sure but probably not MS and to go back to them if any further issues… well I tried due to ongoing neurological symptoms that can’t be explained by b12, physical damage etc but GP wouldn’t refer. Saw a private neurologist recently and she said I need a follow up brain and spine MRI and is referring me back to NHS. My symptoms are weakness,numbness and itching in my left leg and an internal tremor I get sometimes (feels like your spine is vibrating). The neurologist tested what I could feel using a tuning fork and I couldn’t feel it on my left toe and ankle… The more I try to do each day, even a normal amount, the worse it feels. And it comes in waves for a week or so where leg is really weak and useless and then lets up for a bit before getting worse again.

My case is not straightforward because they said in 2021 I have migraine pattern on my brain too and I’m on iron tablets (though my ferritin was never out of range) so they weren’t sure apparently.

hopefully I find out something from these lastest MRIs and won’t stay in limbo much longer.

But has anyone else experienced these symptoms without more obvious relapses or recorded optic neuritis?

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Hi @cellebee

I can’t say I’ve experienced those symptoms. Hopefully someone will come along who has had a more similar experience to you.

In the meantime, there is information on symptoms of MS on the MS Society website which you might find helpful.

I hope you get your referral and find out a bit more what’s going on.

Wishing you all the best

Alison

Thank you for your reply Alison. I don’t think I explained it very well, basically it’s left sided numbness and tingling and itching in primarily my left leg. It feels heavy and weak at the same time and it comes in waves for a week or so and lets up a little and then gets worse again. It also travelled up to my arm for a couple of days back in the summer. The loss of vibration sense is just how they test what I’m able to feel. When the neurologist held the tuning fork to me left toe and ankle I couldn’t feel it. I hope this makes more sense :slight_smile:

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