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Reen

I’m looking for advice and general comfort that others have had or going through the same as me.(not that I would wish it on anyone)

my symptoms started early feb after I hit my head at home . Started with numbness down my right side increasing over a few weeks. I went to a&e where they did a ct scan , nothing showed and as I had hit my head they linked it to concussion. So off I went . Another week passed and double vision came in left eye and tinnitus in right ear. I was struggling to walk and cope at all with my 3 year old which broke my heart.

We went back to a&e this time and I was admitted. MRI the next day to confirm multiple lesions in my brain and suspected MS.

that moment I will never forget. A million things went through my head. Will I end up in a wheelchair, will I work again. I was in hospital for 2 weeks, I had a bad reaction to LP so took a while to work on walking again. So I’m still off work, hopefully going back next week just on 8 hours phased return.

My symptoms are still up and down though, so I felt like I was very slowly getting better but this last week my right side is more numb again. I’m confused weather this means it’s active or classes as relapse.

Im only classed as clinically isolated syndrome at the moment as LP was negative so means even though they say I had an acute first incident.

They were talking about lemtrada, which I think has been withdrawn now. Im scared of relapse, also feel concerned about a lot of the treatments.

Any advice or experiences welcome as I feel so unsure about everything at the moment.

Hi Reen I too had a negative lumber puncture my neurologist told me last week so that is good news but (there’s always a but) I do have shakes on my left side which he noticed plus I have itches which where it is is not good. He also said the symptoms may come from my medication or my thyroid. He is though keeping me on his list and has posted my appointment to see him in April next year. He also said that I have a few responses that are not normal. Go figure. He went on to say that most people that have MS have bands in the fluid of your spine but there is a 5% chance that I could have it with a negative LP. So no more news until next year. Limboland here I come. Kay