I'm going insane

New diagnosis and before diagnosis
1

Hello everyone,

I’m new to the site and am reaching out because I need to talk to someone and this is the perfect place. I am 29, a PE teacher and a sport mad lady. I have been experiencing symptoms for over a month now. vertigo, headaches, blurred vision, sickness, loss of appetite. I have had my first experience of tingling in the fingers today, it lasted a few minutes and is now gone but i’m in overdrive worrying about what this now means.

I am over depressed about all this, I go from crying to very angry, to feeling positive. My life is totally in limbo and I’ve never been so afraid of something in my life.

I have seen my GP, the eye specalist, the ENT doctors and now I’m seeing a neurologist. I’m going for a lumbar puncture and more blood tests in 2 weeks and I’m scared of it because the procedure it’s self is gonna be horrid and this is the one that will give me definate answers (or so I understand it),

I am a total mess and feel all alone. My mother is really rubbish and when I told her I may have MS she said “oh, have to wait and see” and hasn’t bothered to call me since to even see how I feel about it all. My sister told me I’m letting my anger consume me and that I need to stop. I am angry but it’s not consuming me, it’s not there all the time, right now fear is the big emotion.

How did others get through this, how do you cope with the impact that this has on the rest of your life (missing lots of work right now) HELP ME!!!

Thanks for reading

Emma

2

I can relate to a lot of this Emma. I spent 5 years not really knowing what was going on and when I finally got a diagnosis, in some ways it felt like a blow and in others it was a relief.

I’m afraid people can be very non understanding. I still get the ‘but you don’t look sick’ looks and it really makes me mad.

Because you are at a very uncertain stage the best you can do is soldier on. I know this isn’t very helpful and I’m sorry I can’y say more to help. I’m kinda new at this myself but if you need someone to vent at, I can at least do that.

I wish you all the best.

3

Hi Em, right…breathe in …1, 2, 3…and exhale.

Do this several times…i have to when I am worked up. Like this morning when the postie brought me something totally wrong to deal with. I posted about it on el under what the chuff next if you wanna read it.

I know what life in limbo and not knowing what the chuff is going on is like.

Has anyone suggested ms could be the problem, or have you been googling ms and decided it might be responsible for your problems?

Some of it could be ms, but other things not so .

About the lumber puncture…that alone wont give a diagnosis of ms. MRIs and other tests point the way. Unless you have obvious lesions in the MRI, a neuro wont rush to give you a diagnosis.

If you do get a diagnosis of MS, then your life will still go on…there is life after that, honestly! There are oodles of folk here, who have had ms for eons and they still manage to live a good life.

I dont have ms (anymore!) I was mis-diagnosed for years and spent lots of time having tests and appointments, which drove me nuts at more than one time. I still dont have a full dx after 15 years.

Yet, I still manage to enjoy my life. I retired on ill health when I was 48 and I am 60 now.

When I realised this thing wasn`t going to go away, I had to find a way to live with it. This meant finding help like Physios, Occupational Therapists, district nurses, the continence service.

Now dont fly into another panic as you read this. If you need suchlike it is there…but you may not.

Also please dont assume MS means you will inevitably end up in a wheelchair.

Many folk dont.

I have but even that has it`s positives for me.

Just hang in there until you see the neuro and try to be positve hun.

luv Pollx

4

Thanks Poll,

I’m trying to hold on to the positive things but it’s really difficult.

Sorry to hear about your troubles, I hope this doesn’t come across as rude, but just hearing about someone elses troubles makes me forget about mine for a second. So thank you.

The neurologist has said possibly MS, there are lesions on my brain MRI so the lumbar puncture is the next step. You know what doctors are like though, nobody wants to confirm anything untill every possible test is done.

I’m just really afraid & hanging in there is really hard to do.

Emma

5

Hi Emma and welcome to the site, Poll’s right, you need to take a step back, take a few deep breaths and calm down a tad. Stress and anxiety can all add to your symptoms, exacerbate them even, and you don’t want that on top of everything else… First off; an LP sounds nasty, and granted it is a little uncomfortable, but it’s not painful, and it’s not as bad you’d think it would be. After you’ve had it done, try to rest up, stay flat on your back for a while and drink plenty of water, caffeinated drinks (full sugar coke etc) and if needs be, take a couple of paracetamol. Combined, these few things can all help to avoid the monster headache that some get after an LP. An LP may help when put together with the results of scans, symptoms, relapses etc, but it doesn’t guarantee a diagnosis. Unfortunately there is no ‘one’ test for ms, which is partly the reason it can sometimes be a long haul in getting any concrete answers. Try to remember also, that there are many conditions which can have the same or similar symptoms as ms (not all of them serious). Your neuro will want to rule them out too, so try to keep an open mind. As for how people cope; well I think that varies from person to person. Keeping things in perspective is extremely difficult but the upshot is, if we spend all our time worrying about the future, we’d never live the present. Some things are out of our control, so the only thing we can do is to go with the flow and see where it takes us. Cross the bridge as and when you come to it, but for now try to look after you as best as possible and take each day as it comes. Consider each test you have, as another step closer to finding out what’s going on. Hope that helps a tad, let us know how you get on. Debbie xx