Awaiting official diagnosis :(

New diagnosis and before diagnosis
1

Hello all.

This is a pointless post really but this week my world has come crashing down around me.

I’m 31 and generally well and healthy. Haven’t even caught any of the nasty bugs going around at the moment, despite people dropping like flies around me.

To cut a long story short I woke up one morning feeling a bit disorientated, slightly drunk almost. Within a couple of days my vision was shot to pieces and I ended up in hospital on IV steroids for 3 days. Double vision and one of my eyes was literally moving around like it was being remote controlled by someone else. During this time my smile also went lopsided and some of face felt numb. I haven’t felt and still don’t feel tired or unwell.

Loads of tests have been done. MRI showed two small areas the doctors referred to as inflamed (I now know this means lesions which freaks me out even more) all other results negative so far. They sent 4 samples off for my lumber punch and three have come back clear. I’m still waiting to hear back about the last one which hopefully should be next week. No infections have been found. At this point they think it’s likely to be MS.

I can’t begin to describe the range of emotions I’ve felt this week and I came close to losing it at one point in hospital. I’m calmer now but petrified about my future, angry that my stupid body appears to be attacking its self and feel incredibly alone right now.

2

Don’t feel alone. Sadly there are far too many of us on the same road as you are.

I turned 30 recently and around the same time lost the sight in my eye and thus began my road to diagnosis. It took a couple of MRIs and another relapse but I was diagnosed in December.

I had a couple of tough weeks after the diagnosis and as you mentioned I felt very down about myself, about my body letting me down. It affected my self esteem, I felt ugly and it felt very odd to think that my body was waging war against itself. Stupid immune system.

I took some time and let the dianosis sink in. I was off work and surrounded myself with friends and family. I gathered all my support and I can say, a month on, I am a lot more positive.

Not only that but I feel a lot healthier. I’m more energetic and less hard on myself about the fact that my body is letting me down.

Having said that, you might not have MS. It might be something else. But if it IS MS, then you’re far from alone. I have found tremendous support from my loved ones, from my community and from the medical profession. I wish I had these boards while I was waiting for my diagnosis as the support seems to be really excellent.

I don’t think anyone, even with the best will in the world, can fully understand unless they’ve been there themselves. Waiting for a diagnosis is scary and stressful and allows you way too much time to ponder the worst.

However, in my own experience, once the diagnosis was done, things got back to normal pretty quickly. Initially I thought about MS every minute of every day and pondered the possibilities endlessly. Less than a month on and MS is part of my day with the occasional thought or worry, plus the daily meds, but I’ve accepted that I have no control over it and I just have to keep on trucking and hope for the best.

I really do believe in a positive attitude and I know that it’s nigh on impossible when you’re waiting to be diagnosed. But a diagnosis, for me anyway, made things easier in a strange way. I could just get on with it.

3

Hello Anon,

I’m inclined to agree with Meme. Until you actually get a dx all kinds of thoughts go through your head, but as soon as you have a dx, well you have to carry on living in the best way that you can. If and I say if, it turns out to be ms, get all the support from relations, friends and tell them how you feel. Whatever you do is not keep your emotions to yourself it would only make it tens times worse. There are brochures you can get to read up on it, but everyone is different and no two people have exactly the same symptoms. I wish you the best of luck and rememeber if you need to rant then we’ll all listen and understand.

Take care.

Janet

x

4

Hello and welcome :slight_smile:

As the others have said, MS really isn’t the end of the world, but I think the doctors may be freaking you out more than’s necessary because MS is not a dead cert by any means. MS can only be diagnosed after someone has had at least two separate attacks. This is because about 50% of people who have a first attack never have another one. The fact that your MRI showed a couple of lesions increases this figure a wee bit, that’s balanced by the clear LP results because that reduces the figure - so you’re probably back at 50% again.

It’s also possible that you’ve had a one off attack that is a mimic of MS called ADEM. Clear LP results would also be more consistent with ADEM than MS.

There are other things too, e.g. GBS, so do try and stay hopeful and keep an open mind.

Please don’t get too freaked by the word lesion - all it means is a damaged area, like a cut or scar. They can be caused by all sorts of things including migraine, vitamin deficiencies and even old age and very often don’t even cause any symptoms. The brain is pretty remarkable too - it can often work around lesions, building new connections and using different areas to compensate. If you were in an accident and broke your leg, it might take you a while to get back on your feet and you might have a bit of a limp afterwards, but it’d be OK. Same goes for the brain a lot of the time: a bit gets damaged, it takes a while to get back to working order and there might be a bit of residual symptoms, but it’ll be OK.

Take it one day at a time. Hopefully you’ll start to see improvements soon.

Karen x

5

Thank you for your replies :). My sight is gradually returning although I have come down with a cold at the moment.

I didn’t realise you needed to have two separate incidents to be diagnosed so I guess even if the last test points towards MS I will be in limbo for a while. I’m keeping everything crossed that it doesn’t come back.

I’ve trawled the internet for the last few days and the more I read the more scared I become. I can cope with not being able to drive, not being able to walk even, but the thought of ending my days being tube fed and hoisted from bed to chair is not something I’m prepared to endure.

Right now it’s all the practical stuff to worry about. I’m signed off at the moment and work is being great but the job I do is demanding and requires you to be on form. We are also going through a restructure soon and I need to state my preference by the end of the week as to which geographical area I want to work in. I had planned to relocate and this was something I was looking forward to but with this hanging over my head I’m not so sure.

Part of me thinks carry on with my plans as I can’t put my life on hold with what ifs but the sensible side of me worries how I’d manage on my own with no friends or family around me.

Another question I want to ask please is about the tiredness which seems to go hand in hand with MS. Is it possible to have MS without feeling fatigued or does this come later?

6

Hi Anon,

My, my you are looking on the black side of things, not every mser has to use hoists or be tube fed. I suggest you stop trawling the web. Don’t put your life on hold as life goes on even with ms. If it does come back as being ms you will want your friends and family around you for support, emotional support and understanding. Keep positive and do what you feel you can. Fatigue is associated with ms but it can also be caused by the drugs you take. Most msers have a rest at some time during the day, usually around 3.00 pm then we keep going. Hope this helps.

Janet

x

7

I completely agree with Janet - stop browsing!

The proportion of MSers who end up being tube fed etc must be absolutely miniscule! MS really isn’t like that for the vast majority of people.

As far as fatigue goes - it’s very common, but like all MS symptoms, some people don’t get it, some people get it mildly, some people get it severely and everyone else is somewhere in between.

Please do not put your life on hold. Otherwise all you’ll end up with is a whole load of "If only"s when you look back on your life.

MS is NOT the end of the world!

Karen x