Struggling..

New diagnosis and before diagnosis
1

Hi There, I’m new to all this… and at present without a formal diagnosis however have been told that they think it’s 99% I do have MS.

In June of this year I started having tonic clonic seizures, out of nowhere, and was then diagnosed with epilepsy and started on medication (Keppra) which has been changing in dose as and when I’ve had further seizures. It’s been a lot to adjust to, the medication isn’t nice. I had an EEG and an MRI as part of the epilepsy diagnosis, and neuros were expecting results to come back normal as they do for most people with epilepsy, however… both mine came back abnormal. My brain MRI showed of inflammation/plaque all over the brain, and the EEG showed abnormal electrical activity. The neuro said my brain looked like that of someone with MS and that possibly my epilepsy is a symptom of the MS. I’m booked in for a spinal/neck MRI next week and a lumbar puncture soon hopefully in order for them to diagnose MS if this is what it is… I’m not sure if there is anything else it could be.

Since all this, I’ve generally just been feeling terrible and hard to know what might be a side effect of epilepsy meds and what might be MS symptoms. I’ve had terribly tingly legs which don’t stop my mobility but is VERY annoying and constant. I’ve also got terrible vision and headaches. The vision is hard to explain as it isn’t really double vision or even blurred particularly, it’s just incredibly hard to focus and sort of fuzzy… has anyone experienced this?

Im just scared of what might happen in the months to come… what treatment for newly diagnosed people with MS is and what effects this has. I’m scared everything is going to get worse and obviously my head goes to the worst…

Really any any advice or help would be greatly appreciated. I have found neurologists to be particularly UNHELPFUL which is a shame.

Lils (29, female)

2

Crumbs, poor you - what a rotten time you have been having. That’s a lot to deal with for a young person who has (I assume) enjoyed normal young person’g good heath up to now.

I hope that you get some clarity soon, and that your neurologists talk to each other. You should be in with a fighting chance of a co-ordinated response, given that the specialists in epilepsy and MS will, typically, at least work in the same department, which is a good start! From what you have said, that doesn’t seem to be helping as much as one would wish, though…

I am sorry that you are having such a worrying time.

Alison

3

A lot has happened in a very short time - my guess is that the neuros are unhelpful because they’re not 100% certain what they are dealing with. My feeling is that things will settle down and hopefully your medication will be sorted out.

4

Thanks for the support. I hope it does get sorted soon! Would like to get my life back to what it was, or at least a little how it was! As far as it can be.