First post, undiagnosed neurological symptoms and scared

Hi. This is my first post on the forum so going to give some background.

I suffer from hemiplegic migraines which affect the left hand side of my body during an attack, I’ve had them for years so I know the symptoms and what an attack is like.

On the 25th of January this year my legs gave way and i lost feeling and movement in them along with my left arm, I was lying on my kitchen floor for 2 hours until my mum drove from her house (an hour away) to rescue me as my partner was in London for work that day (we live in Scotland. I was in hospital for 5 days, 3 of those days i couldnt even feel my legs never mind move or walk. I didn’t have a headache which is why I knew it wasn’t a migraine. The neurologist eventualy decided it was functional after i had an mri scan of my spine. They didnt scan my head despite me asking if they could as I have the migraines anyway but the spine scan showed nothing. I was sent home with a stick and still cant walk without it outwith my flat.

I have other symptoms aswell including nausea, bowel problems, blurry vision, concentration and memory problems to name a few. The most worrying thing is that I have a feeling of electric shocks shooting up my spine that make me spasm. This happens a few times a day and is painful.

My mums friend has MS and has a lot of the same symptoms. I dont want to self diagnose but I dont believe that this is functional and there is nothing the doctors can do. I can’t keep living like this either. I am waiting on a neurology appointment which I asked for in February, Ive been told I might get one next month.

I’m not very good at explaining what’s going on and dont know if i’ve done this justice. I’m just scared and feel alone and thought I might meet some people who understand what I’m going through on here.

hi lynsey

just try to put into words what has been happening to you.

make a list to take to your neuro appointment.

a good neurologist will listen to your list, dismiss the ones that aren’t significant and make note of the ones that are.

it’s a long haul to diagnosis so dig in now.

you could telephone the neuro’s secretary and see if there are any cancellations that could be offered to you before next month.

good luck.

you might be able to use this time to look into mindfulness meditation which is a great help.

also read up on treatments that may be offered if you ARE diagnosed with ms.

the ms society have a page on treatments, Disease Modifying drugs.

carole x

Thanks Carol.

I’ve written a list for the neurologist and have phoned the secretary a few times. She just says she is sending a letter out soon, last time she said she would send it out in may and i would need to phone to make an appointment.

Just hope I get listened to this time. Will look on this website just to prepare myself.