Hello everyone 
I don’t have a diagnosis yet but it’s being investigated.
I was diagnosed with epilepsy in 2015 (I had it as a child but it stopped for a long time, the type I have now is less severe) but about 3 years ago I started experiencing new symptoms, which I’d never had before … these new symptoms were numbness around and across my face, and spasms in my arms and legs and my back. I told me neurologist at the time, who just wasn’t interested and just kept offering to increase my epilepsy medication even though I was saying that maybe it was something else because I’d never had anything like this before and I explained that there was a lot of autoimmune disease on my mums side of the family including my mother having systemic sclerosis (but this was the same neurologist who told me ‘it’s all down to the stress of being a mother’). For the past 2 years these symptoms have been getting worse, with a lot of new symptoms happening.
The numbness and pins and needles is no longer just around and across my face, it is down my arms and legs and gets worse the more tired I am, the spasms are still happening but on a regular basis, I have tiredness all the time, but sometimes this is really intense…I don’t know if anyone does or has done night shifts, but it’s like i’ve been doing a few days of night shifts then going to sleep then having to get up again within an hour or so (I was a student nurse, had to leave right at the end before graduation due to health getting worse) and that my limbs feel really really heavy.
My coordination is rubbish, my balance keeps going, my left leg just decides to stop working and I end up on the floor. I’ve fallen downstaires a few times due to me having this weird feeling when walking, that when I put my foot down the floor isn’t going to be there, I assumed one time whilst carrying washing downstaires that the stair was there and that it was just me thinking that it wasn’t … so I fell downstaires. I lose total feeling of my legs.
My memory is absolute rubbish and my speech stops working sometimes as in I can’t remember words… or I speak total gibberish… I know what I want to say it’s just I can’t say it. Brain fog is constant and I have random pains across my skin, when I’m wearing tights it feels like there is glass or something sharp in my tights but there isn’t, I have burning pains or stabbing pains in random places on and off. I also have a feeling of water dripping down my face or that there is a hair on my face when there isn’t. The more tired I am, the worse everything is and periods and drinking alcohol makes everything worse too (the alcohol thing isn’t much of a problem because I don’t drink much anyway and can happily do without).
I was admitted into hospital in 2019 due to sepsis which had been caused by my intestines being that badly infected that they were nearly perferated, the Dr there said he thinks that it was caused by my auto-immune system attacking my intestines. Whilst I was there I had a CT scan which revealed sclerosis in my lower spine, but it was just in that one place so they didn’t do anymore tests, other than the ones to see how far the sepsis had spread.
Due to the worsening of symptoms over these past few years my GP (after nearly a year of reporting new symptoms to them) referred me to an epilepsy specialist nurse, she was really really nice and listened to everything I told her and said that she’d had 30 years of experience of working as an epilepsy nurse and that this isn’t epilepsy, she said I do have epilepsy but this is seperate from the epilepsy and told me that she was going to refer me back to a neurologist as an emergancy appointment, but that it’d be a new referral and not for epilepsy… she also told me that it was a new neurologist because the other had retired (she seemed quite happy about this).
Within a couple of months I had a letter about an appointment with the neurologist but the lovely Welsh government moved the appointment to a phone appointment, due to Covid. He called me and said that there’s not much point talking to me on the phone (he was nice) because he actually needed to see me, and he said what the specialist nurse said, that it wasn’t epilepsy but something new… he asked me a few questions like ‘does this, this, this happen’ I said yes and he asked if things ‘came in waves’? I said yes but a lot of waves. I’m now waiting for an appointment with him at his clinic.
Sorry for the long post, it wasn’t meant to be that long… I’ve always not been very good with outlining things lol but IF it is MS … will medication make some of these things better? I WAS an artist, I can no longer do this because, similar to what sometimes happens with my speech … I can’t make my hands draw or paint what is in my head (this is all the time unfortunately) so I’ve moved to doing other forms of art but I’m having the problem of a pain down my neck into my back and the numbness and pins and needles worsening when I do this.
I’m not asking for a diagnosis, but does the medication help with symptoms or is it just to try to prevent further damage?..even if some things stay the same because there are some things I can deal with…but I’d really like to get rid of the tiredness, the balance and coordination problems and this pain in my neck… because those are what are causing major problems for me… I can manage the numbness and pins and needles even though it’s really annoying.
Also I’m having this really weird thing at the moment, which I’m wondering if anyone else has … where I’ve had to get a computer mouse because I can’t use the mouse pad on my laptop anymore, I keep clicking the right part of the pad…I try to move my hand across to the left but it moves back to the right… it’s like my brain won’t register there is a left part? I also can’t find keys on my laptop without looking (I used to be able to type perfectly well without looking at the keys).
(sorry again for the essay)