So when did my MS journey begin (Part 4)

Fortunately the waiting game didn’t last too long. I had a date for my MRI scan through within 2 weeks and 1 weeks later I was off to the hospital at the crack of dawn on a rainy Thursday morning.

Doctor W had signed me off work for a month earlier that week – my response had been “a month, that long, really?”. I was still expecting to wake up and find my symptoms had miraculously disappeared over night. I couldn’t persuade him otherwise though, he was adamant that I would need a month because it would take a couple of weeks for the results to come through and my symptoms hadn’t improved very much (the numbness had reduced but the pins and needles had spread).

Luckily (or unluckily depending how you look at it) I’d had to go for an MRI scan 7 or 8 years ago following a car crash so I knew what to expect. More importantly I knew what to wear! As silly as I felt wearing a bikini under a baggy t-shirt and leggings it was better than the poor man waiting in the cubicle next to me in a very attractive hospital gown and nothing else!

Also, had I not been for one before I may have freaked out when there was a power failure just as they were about to slide me in! Fifteen minutes later after they’d rebooted the scanner (by doing the classic switch everything off, wait a minute and then switch everything back on) I made it inside. It’s hard to describe what it’s like being in an MRI scanner. I know lots of people find it scary and claustrophobic but they don’t bother me. If it wasn’t for them being incredibly noisy I’d probably have fallen asleep. The noise is weird – kind of like a ZX Spectrum games console loading up combined with someone alternating between hammering and drilling on a building site. They scanned my brain first and then they sent me further into the scanner to do my spine – it probably took around 40 minutes in total.

The Radiographer advised me it would normally take 2 to 3 weeks for the results to be sent to my Doctor. But wouldn’t you know it, the following Monday only 4 days after my scan I get a phonecall from the receptionist at the Doctors surgery. “We’ve received the results of your MRI scan and the Doctor would like to discuss them with you, will you be able to take a call from him tomorrow morning?” the receptionist asked. That was what clinched it for me, Doctor W had told me to leave it a week before I rang to see if they had heard anything, yet they were in already & he was ringing me to discuss them.

It sounds really negative, like I went into that scanner already thinking I had MS. I suppose I kind of did, not that I wanted to have MS and I still don’t but I was prepared for the possibility or rather the likelihood. So when Doctor W rang me the next day (Part 1) it was okay, I could deal with it. Having to tell other people & there response – well that’s a whole other story, but I was okay or rather I was going to be.

So when did my MS journey begin? (Part 3)

So 8 weeks ago I was feeling particularly rough. I’d had a nasty cold which started to get better but then decided to get much worse. After around two weeks I noticed I had a bit of an achy/numb lower back and bottom – a bit like I’d been to watch a really long film in the cinema (say The Hobbit). The next day I noticed it had kind of spread to the top of my legs and I had achy feet and legs. The next day the achy feet and legs had turned into pins and needles. The day after that I had a band of numbness all around my body from my lower back to a third of the way down the top of my legs and from my feet up to my lower legs I had the worst pins & needles ever. Initially I had thought I’d trapped a nerve as I had a really bad cough which I was having to take Night Nurse to sleep through but by the fourth day I was getting scared that it was something else.

I rang NHS Direct who were lovely but didn’t really put my mind at ease. Rather than putting me on a call back they gave me the number of my local on call doctor and told me to ring them immediately. They asked me a lot of the same questions as NHS Direct many of which seemed to be checking I hadn’t got Meningitis as they kept asking me about rashes & bright lights. They then advised me that I should go straight to my nearest A&E to see the out of hours doctor there.

We got to A&E who were expecting me and went straight through to the doctor. She got me to lay down and moved my legs around a bit, she asked me some questions and then looked confused. I mentioned about the things that happened in part 2, she still looked confused. She prescribed me some antibiotics for my cough, said that she thought I’d probably damaged some peripheral nerves coughing and that she was happy for me to go home “providing you see your doctor ASAP, you should have an urgent MRI just to check whether its MS”.

The moment she said that, it was in my head – I’ve got MS. We left the doctor & I burst into tears “I don’t want to have MS” I told my husband. He reassured me that it probably wasn’t and after I had calmed down I pointed out even if it was “President Bartlett ran a country for 8 years with MS” (I’m a massive West Wing fan!).

Two days later once my report from A&E had gone through to my surgery I met Doctor W for the first time. I was still a panic ridden mess as the sensations in my legs hadn’t improved. I told him the conclusions of the doctor in A&E, he immediately said that it definitly wasn’t a trapped nerve. He didn’t say anything either way about MS but said he would request an urgent MRI for me. He suggested that I may have Guillain–Barré syndrome and sent me for blood tests.

I felt slightly better, he’d given me the name of something I may have – I looked it up online & my symptoms matched up. He told me it would probably last for a few weeks. But it was there in my head now and he hadn’t ruled it out so I looked up MS too. My symptoms matched up and not just these symptoms but all my other weird episodes too. So now it was a waiting game…

So when did my MS journey begin? (Part 2)

The first odd thing happened in August 2012 at the Speedway GP held at Cardiff’s Millennium Stadium. It had been a stiflingly hot day but I’d managed to stay out the heat for most of it. However, in a stadium filled with over 35,000 people and the roof shut it wasn’t so easy. I’d been drinking plenty of soft drinks however towards the end of the event I started to feel dizzy and boiling hot even though the temperature had started to drop. It didn’t matter how much I had to drink I felt desperately thirsty and my hands felt shaky. I’d finished my drink and those belonging to my parents but I was still thirsty. I couldn’t purchase another drink because the refreshment stands had closed so in desperation I went to the St John’s Ambulance Medical Station. I managed to convince them that unlike many of the people they had treated that night I hadn’t been drinking and just desperately needed water.

An hour later, well after the event had ended and after drinking 2 pints of water they allowed me to leave. They contemplated sending me to the paramedics but decided it was either low blood sugar or heat stroke and I just needed a good night sleep. I didn’t feel too great the next day but by the day after that I was back in work and didn’t think anything of it until 4 weeks later.

The second odd thing happened as I got off the bus to go to work. I’d not felt well the day before as I’d had a stomach bug – nothing major, just a 24hour thing. I’d felt tired the next morning but other than that okay until I got off the bus. I was running a little late so was trying to rush but when I tried to get off the bus realised I had a really bad case of pins and needles in my right leg. I hobbled through the bus station trying to walk it off but I couldn’t. In fact I couldn’t really lift my right foot off the ground but was dragging it instead. I started to panic and tried to rush to get to work (only a 5 minute walk away) but I kept stumbling like I’d had too much to drink (it was 8.30am, definitely too early for that sort of thing!). Not only that but I noticed my right hand was shaking and my arm had pins and needles too making it difficult to carry my bag.

I got to work eventually, collapsed into my seat and burst into tears. It had taken me 15 minutes to get to work; I felt exhausted and completely freaked out. I rang my husband to come and collect me then made an emergency appointment with a doctor for that lunchtime. By the time I saw the doctor I was able to walk and use my right hand again but my arm & leg felt weak. The doctor assured me that I hadn’t had a stroke (which I hadn’t thought anyway!) and he didn’t think it was diabetes (which I also didn’t think it was!). He asked me if I suffered from migraines which I said I didn’t just the odd headache. We talked about my headaches – the sort that didn’t stop me from functioning but that paracetamol didn’t get rid of, would last a couple of days and then pass. The doctor concluded that I did suffer from migraines & that what I had experienced was a localised sensory migraine. I looked it up on Wikipedia and it made sense, my symptoms did match his diagnosis. Only I’d been looking online earlier that day whilst waiting for my appointment (something I know you really shouldn’t do as you only end up scaring yourself!) & something else had come up that matched my symptoms too – MS. The doctor was so sure though and off course with a choice between migraines and MS you’re not going to pick MS are you? So I went with the doctors diagnosis. I had blood tests, everything came back clear and within a few days I was feeling okay. Life returned to normal, we joked in work about how I’d had another one of my peculiar illnesses and then I forgot about it. Well, I forgot about it until 8 weeks ago…