Here's where I am

12 Months ago Today to be exact, we had a long weekend break in Scotland where i felt really dizzy had trouble walking, I brushed it off as a virus and it went away but left me with Pins and needle feeling and numbness in my feet and legs. After a few weeks realising that this isnt going away I went to the doctors and the then the tests started, Blood test after Blood test reflex tests pins stuck in me and whatever else they could do. In May I was given an MRI and nerve ending tests, the nerve ending tests were all fine as were the blood tests, but i was called back to meet a neurologist. Expecting to be told nothing was wrong just a trapped nerve or something like that, She told me i Probably have MS would put her results in a letter to me and see me next year. When the letter finaly arrived it stated that there is a 85 to 90% chance that it is MS. When i broke the news to my wife i broke down but still carried on in work for a few days then ended up having a week of through exaustion. As of now i just tend to ignore it and not talk about it to anyone but get times where i feel down and alone, this is probably the first time and the most I have said about it, Thanks for reading Phil

Hi Phil

I’m more or less in the same place as you but had a much swifter diagnosis and referral I think. Dizzy spells and slurred speech from January to March 2015. GP said I was a “mystery” in late Jan and after the standard blood tests for anaemia etc referred me quickly (she actually rang the hospital during my appointment at the GP) and by mid Feb had seen a neurologist in hospital. He was junior and said all sorts of reassuring things including that it wasn’t MS, brain tumour etc. but still scheduled an MRI for April. Results letter said number of areas of inflammation on my brain but as symptoms all gone by then I still assumed it was some kind of random virus and all would be well. So when I met with the more senior consultant in June I thought it was really just a formality. Given I’d had an unexplained numb face back in 2008 she said that it was very likely to be MS. Such a shock! I have another MRI coming up in December to see whats been going on in there since March (no new symptoms but it can apparently be bubbling away anyway).

In retrospect I should have taken it all a bit more seriously back in March. After all how many GP’s actually pick the phone up to refer you there and then rather than writing a letter which takes forever. She must have suspected something big was going on.

I had taken my husband with me to the appointment where we were told together that it was MS. I highly recommend this to anyone reading this. He was there with me when I dissolved in tears on the way out. And heard all the answers to my many questions. And could ask a couple of his own. So I didn’t have to go over it all again and again.

After the initial shock and being pretty scared for a week or so we have more or less shelved it mentally. I say more or less because something drove me to go on this website today. It is there in the back of my mind. But I reckon I’m getting off pretty lightly. A numb face in 2008 and some dizzy spells this year. It could be so much worse. its been a wake up call and I’m taking steps to reduce stress. This episode was after a couple of years of intense stress (father in law died rather painfully, got married, did an extension, helped my much loved father through brutal cancer to a painful death, took on care of my mother - all in two years!). So now there is yoga, pilates, gym, saying no to things I really don’t want to do. I have told some key people at work so that they understand when I don’t volunteer to take on projects that are huge and stressful.

So Phil, there isn’t much you can control about this diagnosis, but I’ve found it really helpful to take control of the things I can. I’m taking Vitamin D (consultant said there might be a link with Vit D and it certainly won’t harm you to take the supplement). I’m more aware of stress when its building (I tend to wind myself up a lot and feel pretty angry) and take steps to wind down instead.

Talk to your wife if you can. You’re in this together. She’ll probably be wondering how she can support you but she can’t unless you tell her. She’ll know you’re down but probably not why. Easier said than done, I know, but it might make you feel less alone.