Lesion, oligoclonal bands and 10 years

New diagnosis and before diagnosis
1

Hello,

I guess this is somewhere to turn to whilst being investigated.

10 years ago I had an MRI on my brain for another illness, and just so happened I was referred to neurology for having a lesion in the periventricular due to demyelination. Fast forward a few months and I had a lumbar puncture with oligoclonal bands in my csf and was sitting in front of a neurologist. He told me as I had no symptoms, he wasn’t going to diagnose me with MS (I was 21 and had no idea what all this meant).

Fast forward 10 years.

I started having muscle 'jolts" when id get in bed at night in my legs and occasionally abdomen. I also would have stiffness in my hands, where they became like claws. I knew something wasn’t right, but I didn’t think it was enough to visit the GP.

Beginning of march, I had hyperreflexia, muscle spasms in my face. When putting on face makeup on my cheek, my eye would twitch shut and my mouth would droop. I woke up a few days later to vertigo. Worst thing in the world by the way. I managed to resolve the vertigo with movement (epley manoeuvre - what a god send). But for the last three weeks I’ve had dizziness, feel unbalanced, gaits off at times, mostly the mornings, flashing lights in my vision. I’ve tried to explain my eyesight changing and although not blurry, felt like a film not fitting the screen correctly and when this happened, I knew my gait and balance would be off. The vertigo also came back.

I’ve woken up a couple of nights with muscle jolts in my leg but my new symptom is my quads… They feel heavy and weak. I can move them, but it feels like I’ve done a work out without the pain. Little spasm in my left quad.

Anyhooooo. I’m awaiting a repeat MRI and neuro apt. We all know how long this can take.

I guess I’m stressed because I feel like at times I’m questioning whether it’s in my head, and wondering if I’m reading into every single symptom of whether it could be MS.

What doesn’t make sense to me, is the 10 year gap. Would I really have such a long gap for symptoms? It’s frustrating because I’ve had to go sick at work, and I have nothing to base it off.

Thanks x

2

That’s been quite a saga for you :pensive_face:

Questioning everything is really quite normal both before diagnosis of MS and afterwards, it took me years to stop being hypervigilant about every little thing and wondering if it is a relapse.

The gap isn’t unusual I don’t think, there’s a professor called Gavin Giovannoni Twitter done some really interesting work on brain health in MS, and I remember talking to him one of the MS life expos. The way I understood it from talking to him was that when you think there’s nothing going on it’s like when a fire is spreading underground, so it’s burning up myelin around the nerves the body doesn’t use much, occasionally Flames will shoot up and burn something which is kind of a relapse. I do a picture in my mind of a piece of kitchen roll set on fire with a lighter once the initial flame dies down the paper carries on burning up with little sparks eating away at it. I don’t know if that makes any sense at all, but it works in my strange brain! MRI scans of my brain now show Black holes where a whole area of brain the size of a grain of rice has vanished. So although you’ve not had a relapse necessarily you have been losing spare capacity in your nervous system. The problems that you’re having with your eyesight really does sound like optic neuritis, when I’ve had it a few times looking out of one eye is normal but looking out of the other eye there’s a weirdly pink wash over everything.

As they say, when you’ve met one person with MS you’ve met one person with MS. Everybody’s experience is slightly different.

Hopefully it won’t take too long to get some answers. Hang in there :+1:

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Hey,

Thank you for the reply! Was nice to hear someone else’s views.

Today’s new symptom is a feeling of sunburn in patches over my torso/back. Even though I don’t have sunburn…

That’s a very good way of explaining it. Just need to get a repeat MRI out of the way to see what’s going on! Sigh

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