MRI and possible new diagnosis

New diagnosis and before diagnosis
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Hi everyone I’m just after a little advise or maybe just thoughts.

Back in 2024 I was at home cleaning and started to feel ‘off’ I knew something wasn’t right and asked my son to go get my husband. As I sat down my whole left side became numb, this scared me so I went to go find my husband and then him and my eldest came in and I was just stood and couldn’t move.,my speech was slurred and the left side of my face was drooping. Ambulance called and off to hospital with suspected stroke/brain bleed. A few hours later I was absolutely fine, all tests and head ct clear. No idea what it was and told to come back if happens again. 18days later I was at work (fortunately I work in a hospital) happens again but this time my breathing was affected and had to have help breathing. My brain was telling me to breath but I couldn’t and also I couldn’t tell anyone anything, again paralysis and slurring. Again down to resus and again within a few hours I’m fine and all tests clear. They said it wasn’t a stroke or neurological but as I was staff a had a ‘quick’ consult with neuro (lasted about 3/4 mins when he came to see me on the ward) again no one has any idea and to come back if it happens again. These episodes have been happening on and off since then. I now know not to bother going to the hospital as they have no clue and I k own I will be ok after 15/30 mins. There is no patterns to it happening. I went to the doctor again recently as it keeps happening and my family are worried, this doctor again said I’m describing TIA (stroke) symptoms and would refer me. I spoke to the stroke clinic where I was told no my symptoms are more migraine with aura but he would get me an MrI to rule out stroke. Had the MRI on 12/12/24 and I received a letter last week saying my MRI was clear for stroke but was ‘suspicious for MS related demylination’ and they would speak to neuro and get their input. I have been told the wait list for neuro for routine appointments is 12 months…..so now I’m a bit stuck and in limbo, I really was not expecting anything like this but worried that I’m overthinking it and that it’s potentially nothing. Has anyone has a similar letter from an MRI and what Ian usually the next step as I feel 12 months is a long time to be in limbo? Thank you :smiling_face:

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Hi Ericola. That does sound unpleasant but, you’re on their radar now so, things will move along albeit slowly but, it sounds like you are being looked at at least.

My demyelination and brain lesion are mostly on the right side so, when I have focal aware seizures (they don’t last long, they’re just unnerving) I can be effected by what I’m told is called Tods paresis on my left side (usually arm and hand) it’s strange what you can get used to and learn to manage.

Try to keep a record of everything that you experience. It will be helpful in one of your meetings.

Take care.

Jon.

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Hi @ericola,

Welcome to the forum :slight_smile: We’re a friendly bunch.

I haven’t had similar symptoms to you, but I did have an MRI (for an unrelated reason) and the report on that used similar wording to yours - something along the lines of demyelination in a pattern that indicates possible MS or something like that.

I got referred to a neurologist but wasn’t sure what the waiting time would be and was quite worried. I decided to see an MS specialist neurologist privately which was helpful. Then my NHS referral came through quite quickly, and that was to an MS specialist neurologist so that was helpful. I had some more MRIs and appointments and got my diagnosis within 12 months of the initial referral.

I think in the NHS, depending where you are, the initial Neurology referral may go to a general neurology clinic, not necessarily an MS clinic with an MS Specialist neurologist. It could be worth contacting your neurology appointment and seeing which clinic you will go to.

12 months seems a very long time to wait, especially with such debilitating symptoms. I don’t know if seeing an MS Specialist neurologist privately is something you would consider or would be possible for you, but it might be worth considering. If it’s any help, I paid £250 for a 40 minute appointment.

Sending you best wishes

Alison

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That should say 'contacting your neurology department’

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