Diagnosed Sept 2014, my life from there...

Hey guys! :wave: So, as the title suggests, I was diagnosed Sept 2014, a couple of weeks before I went to uni. My GP at the time didn’t understand what I was talking about, when I’d go see him after having a simple-partial seizure in my sleep. You know the ones, deep feeling of deja vous and can’t speak. So, one morning, I had one right as my little brother came into my room, asking if I wanted a brew. He saw me vomit into my bedroom bin :woman_shrugging: so, he goes and tells mum, she looks up on NHS Symptom Checker, that comes back with TIA, or transient ischaemic attack AKA baby stroke, and get to A&E. So, she sends brother to school, really easy as it was at the top of the street, and we go to what was previously an A&E, but it’s now an urgent care place. We fet seen really quickly, and as the nurse was doing a pupil reaction test on me, I had another seizure. She calls up the closest big hospital, gets me in practically right away, and I was seen by different, none GP dDrs

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So, got seen by none GP Drs, they referred me to a neurologist. He trusted that I wasn’t making the stuff up. He had me go for an Evoked Potential (EVP) and an MRI. June/July 2014, I do my A Level exams, go out for a drink after the last one. Mum asked me to let her know when I got to the classmate’s house, I forgot. We got to doing King’s Cup, mum calls me to ask if I was ok. I was, I continued and went home. The next morning, mum tells me to sit, she has some news for me. She had opened a letter from the hospital. It was asking me to be admitted. She had, thankfully, called them up, telling them I was sitting my exams and she’d call them back when I’d finished. So, a couple of days after that, we get :star2:the call!:star2: I get all cosy on my hospital bed with a pack of cigarettes (didn’t smoke them inside! :scream:) Over the next couple of days, I had a lumbar puncture one day, and then a blood test to look at the Notch 3 gene for CADASIL the next. I was discharged not long after, back to my “clueless” life. Results day comes next, so I logged onto the UCAS website, and I screamed out on joy. I actually got into Salford University, to do a BSc in Adult Nursing (big thumbs up to the A&E nurse, and mum and nanna for being very good HCAs at a nursing home!) I met my now partner in 2015, who got it all out of me when I had a seizure as he was driving me somewhere, and he freaked the duck out. His best friend has generalised seizures. So, I thought, “nope, if I want to be with this guy for longer, I’ll have to tell him.” So, I did. I explained it quite well, as he still knows what MS I’ve got, and how it affects me. He is my ICE contact now. We’ve even gone out for a few drinks with the friend that has epilepsy, and as we dropped him off at the end of his street, OH heard a thud, looked behind at friend, saw he was having a seizure. He then starts to run to him, forgetting that there’s a road between us and friend. I stop OH from getting run over :smiling_face_with_tear: before we both go to friend. I get him into the recovery position, ask OH to time how long he’s been seizing. He doesn’t get that far, because friend had stopped and felt ok enough to walk home, with us helping.

Moving on to late 2020. I apparently had a proper stop, drop and shake seizure one night. I remember calling out OH’s name as I made my way to the bathroom. Next thing I know, I was waking up in bed, with OH stirring beside me. I asked him if anything had happened last night, and he gave me the deets. I somehow had a simple partial seizure, until it became generalised. I couldn’t remember what we had for tea the day before, until I saw a fusilli pasta in the sink. That weirded me out. Then comes 16th April last year. OH and I were at our friends’ house (not the friend with epilepsy) and an hour or two later, I have a seizure. Started off like one of my simple partial ones, and I did ask for a bowl that I could throw up into. The next thing I know, I woke up in hospital, wondering where TF I was. I tried asking OH to help me to the loo, but he wasn’t there. I found the call button thing, saw it was a HCA coming, and I asked them for a commode, as well as a pair of PJ bottoms (I had wet myself the night before). I was seen by a nurse and a Dr, I somehow managed to tell them I have MS and epilepsy (don’t ask me how, the post ictal state was really bad). I get moced from clinical decisions to complex care, I get a CT done of my head on the 18th, my OH comes for a flying visit bringing me my meds, toiletries, charger and a few clothes like tops, pants, knickers, bra’s, shoes. He also brings me my self propel wheelchair, I call it my manual one. I get dosed up on IV prednisolone, and I was able to head up to the main entrance for a “breath of fresh air”. If you’ve ever been to Royal Bolton, from the main entrance to lettered wards there is a slope. I loved walking my wheels up, have a breath of fresh air, before letting gravity guide me back to my ward :rofl:

I am a year and 2 months out of hospital now. I came off my copaxone 2 weeks before I was due to go on ocrevus. I couldn’t do it straight away, my wbc was too low because of the steroids. But, I managed to get my first starter dose, though I had to ask the patient transport woman to help me get to the infusion centre by pushing me in my wheelchair. I don’t think I had the woman with my 2nd starter, but come the 1st full dose in December, I had the 1st woman again. She was absolutely amazed at how I could walk, with my stick, and not have to use my wheels! The one I had t’other month, I asked OH to get the day off work, so he could drive me up. That day went swimmingly :grin:

I have been tried on tysabri in 2020, but because I’m JCV positive, they couldn’t chance me developing PML. I have had a letter, carbon copied to my new GP, saying that my CT and MRI are looking to be more like tumefactive MS. When I saw that on the letter, I cried. I called mum about it, she also cried. When I went up to see her and the family, all of us out in the back yard, mum gave it a brilliant namrle by going, “this is not just MS. This is M&S MS.” We all had a good laugh, and my next appointment with neurology, I asked neurologist about this, and he confirms I’m not tumefactive :woman_shrugging:

Thank you reading this far, and I wish you all the best :people_hugging::grin:

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