Firstly, just let me say a quick thank you to everyone involved in this site. It’s been a big help for me over the past couple of days. Secondly, there’s no real point to this post other than to give me a chance to speak to people who understand about what’s going on with me.
I’ll start at the beginning, which was in the middle of June when I was on my stag do in Portugal. We played five-a-side and during the match I struggled to focus properly on the ball and needed to squint in order to be able to see what was happening. I didn’t think anything of it, given that it was hot and I’d had a few beers the night before.
Fast forward a few weeks and I woke up in the morning with the room spinning around. Having had an inner ear infection when I was younger, I booked a doctor’s appointment to make sure that wasn’t happening again. He told me there was nothing wrong with my ears but that it might be worth using a nasal spray called beconase (sp?) I did that, but nothing changed and over the next week or so I began to experience more feelings of the room spinning. The best way I could think to describe it was as if I’d just got off a boat and hadn’t got my ‘land legs’ back.
My GP was concerned enough to send me for a CAT scan and when that came back clear he suggested that he would like me to go to see a neurologist, especially as I suffered a bout of double-vision one night when at a wedding. That was towards the end of July and I’m getting married on September 8th, so I was concerned when he said that the waiting list to do so on the NHS was around twelve weeks. I was fortunate enough to have some savings and so paid to go private.
Initially the private neurologist thought I had migraines and told me that if I gave up caffeine the symptoms would clear, but that he wanted to send me for an MRI in order to rule out an aneurysm. That was on Wednesday 1st of August and I had my MRI the following day. On Wednesday the 8th I had my follow-up appointment and that’s when everything changed.
I walked into his room and he said, “I’ve just been speaking to your radiologist, you have multiple sclerosis”. Obviously it hit me and my partner for six and he told me that he wanted me to go and see a specialist. In the meantime I spoke to a GP friend of mine and a friend of my cousin who is a neurologist himself, both of whom said that he couldn’t diagnose me without at least doing an MRI with a dye injection and that I hadn’t had multiple episodes, so it wasn’t going to be MS.
I met the specialist on Monday of this week and he told me that it is MS. He said we can do all of the tests etc but in his experience and by looking at the scans he’s confident in calling it multiple sclerosis and that the tests will merely serve to confirm his opinion. It’s been a whirlwind fortnight and I’m absolutely all over the show, to be honest.
I’m full of concerns at this stage, not least of all because my vision problems haven’t abated and have, if anything, got worse. I’m obviously finding myself wondering whether that means that it’s primary progressive rather than relapsing-remitting. I’m also worried because the vision issues I’ve had don’t seem to match up with the symptoms of optic neuritis or any of the other vision problems that MS sufferers tend to get.
I’m struggling with my balance and weeing a lot more than usual, whilst also having vision problems all of the time. The tricky thing is that the vision issues are hard to describe because it’s not double-vision, nor is it blurriness or anything else. The best way to describe it is as though the thing I’m looking at is ok but things in the background seem disconnected from reality, somehow.
It’s still early stages for me, so I’m gripped by fear about what’s still to come. Is it going to be PP or RR? Does the fact that my vision and balance problems haven’t shifted at all mean that it’s not going to go away? I had a course of steroids but they made no difference.
Add into all of that the fact that I’m getting married in just over three weeks and I’m sure that you can imagine how my head is absolutely pickled right now.
As I said in the intro, I’m not sure what this post is for. I just wanted to express myself somewhere that maybe someone else might understand what I’m going through.