Hi everyone,
I’ve been lurking here for the last couple of weeks, trying to soak up all the information and advise you lovely peeps post, but felt it was time to come out of the closet, so to speak!
My story (will try and keep it brief!) is that on the 2nd April, my vision went blurry. Went through all the usual tests and was told it was ON (over the course of the next 10 days, I went completely blind in that eye, unable to even see the lights every doctor shone in them), an Ophthalmologist that told me it was ON, there was nothing wrong with me - my vision would return in time, and wasn’t interested in referring me to Neuro until I mentioned I get a numb leg occasionally. I was referred to Neuro, and for an MRI. Had an MRI early May, and an appointment with a Neuro at the end of May.
The consultant did the reflex type tests, and said that I was pretty much normal, perhaps a little delayed with my right arm. She then said she wanted to refer me for an MRI and blood tests. I happened to mention that sometimes when I wake up, I can’t move. My chest feels like I’ve been crushed, and is agony for between 30mins and an hour, and still seems ‘sore’ for a while afterwards. She looked really concerned all of a sudden, and said she wanted me to have an MRI. Luckily my GP had already preempted this and ordered a few that the neuro needed, but I still needed others. My Neuro hadn’t been sent the report for my MRI, so she didn’t realise it’d been done. I told her, and she found it on the system. She said she’d have a look, but she would prefer a report from a Consultant Radiologist. She went through about half of one of the ‘views’ of my brain, and there were about 7 or 8 leisions, one looked like a large one (probably about the size of a 10p piece? Of course, I am probably remembering it as worse than it actually was!). I went through a few other things, and told her that I’d always put my issues down to being overweight, or unfit, or sleeping ‘funny’, or this, or that… I got told I shouldn’t ignore these things. Thinking about things, I think some of my symptoms have been around for years.
I don’t think my Neuro has the same sense of humour as me… She explained that, ideally I could do with losing some weight (I could do with losing about 4 stone in reality!), in case my legs became weak in the future. I pointed out to her that if it does happen, I will lose weight naturally, because I won’t be able to get to the fridge… Yeah… My sense of humour gets me in trouble sometimes… Her face was a picture…
My current diagnosis is ‘Probable MS’. She told me she would write to me to advise if I should take vitamin D or not after she has the blood tests back (9 tubes of blood! And that was the 2nd test! Never had that many before!), and wanted me to see the MS nurse. I’m still waiting to hear something, and I’m guessing these things probably don’t happen quickly. I really want to discuss all the possible symptoms I’ve been having (I get fatigued easily, and always seem to need a day to ‘recover’ from things. Have been putting that down to ‘fat and unfit’ for the last year or so… Also, I feel I am getting more forgetful, and often stop mid-sentance because I can’t remember what word I need to use next…), and I want to find out about the possibility of DMD’s, as it seems from posts on here, the earlier I start the better…
I guess the fact that I’m only a ‘probable MS’ at the moment makes me a ‘limbo-lander’, although by the fact she’s referred me to the MS nurse suggests she’s pretty confident to me, and is just ruling out Lupus and the likes with the blood test… I’m hoping I get to see the nurse soon, as I have so many questions, and don’t know who to ask, or where to get the info. I think I’ve done the emotional roller-coaster bit, but in the matter of a couple of days, so in reality I don’t think it’s really sunk in yet!
Anyway… Thanks for reading, and thanks for all your posts. They’ve been helping answer some of the questions I’ve had over the last couple of weeks! I will be trawling the forums for information and guidance for the next few weeks!