I just wanted to say hello and to offer any support I can, really.
I can empathise a little with what you say re: wanting to know and being terrified of having your fears confirmed officially. That you might be in a place right now, where you just want to grab hold of the 'non diagnosed label ’ you have at present and run for the hills with it. Hide away in case the MS diagnosis then finds you.
I, after seeing a few neurologists; was eventually sent away with a ‘definately not MS’ label. After having been told that it would happen one day to me by another Neuro. Having had such a confusing and to be crude ‘head f****g’ time of it; I really believe that it caused a break down and like you I was left wondering how to feel.
One part of me wanted to run for the hills when they said not MS. However, there was part of me that was terrified of going with the feeling of elation and as if I had dodged a bullet. As 2-3 apparently medical , they know what their talking about ppl; totally disagreed and to a huge extent at that!
I left the room that day shaking and confused and because of the way that I was feeling; I didn’t really take in what else was said.
So I returned a few months later for a proper explanation of why it was not MS. However, in this time; I’d developed a dodgey leg. Like I’d twisted it. This led me to fall down the stairs and make things worse.
So off I hobbled to the docs, feeling quite happy at the fact that it was all going to be explained to me and like you; I’d be able to move on with my life and learn to be happy again.
Only to be told as I walked through the door , that in fact as I had other symptoms . It was now thought that I did in fact have MS and actually got my diagnosis then and there.
Shocked doesn’t quite cover it, I can tell you!
I have to say here though, that I do not blame the Neurologist to this day. It wasn’t his fault about not diagnosing things sooner as I believe that he was misinformed by the other muppets that I saw before him.
I feel very lucky now as I, after having spoken to many ppl like yourself; how distressing it is to know that something is wrong and everyone has a sure idea what it is but cant officially diagnose until all symptoms at the same time are present; to actually have a firm diagnosis. I feel blessed that I can find some sort of calm within myself now after diagnosis.
can say to myself ’ Well, I have MS - What can I do to prevent it from sucking the life out of me again?'.
Please don’t get me wrong , it has taken about 18 months to get to that frame of mind and every now and then I get a sulk on .
So the only thing I can say is,and this is just a guess as I am no professional. Well, it is how I tried to cope with the uncertainty.
I tried to think of MS as being a label or criteria and either having the diagnosis or not, didn’t change the things that I could actually do at the time.
In my case, I decided to get back out on the dancefloor and glam myself up and go clubbing. Granted that was after my leg healed up.
Before that, I decided to finis off a couple of courses I was doing for work and did actually go on a couple of job interviews to further my career.
Beacause I quickly realised that whatever the future brought me, it only came down to one question really. That was, Did I want to live and be miserable, bitter, twisted and angry for the rest of my life? Or Did I want to be happy?
Obviously I chose the answer that I wanted to live and be happy. So, this in turn led me to a path of, well another question really. I needed to find out that no matter what happens with the MS etc, how do I live my life so that I am still happy.
For me personally it was about finding out what things might be available to me if my mobility / cognitive functions got worse. How could I make them work for me?
Like I said -
I am no Professional.
It took me a very long time to get to the place I am in now. Takes a lot of strength to maintain it at times and sometimes I do not have it and crash.
Wishing you all the best hun and hope my waffling has helped a little,
If you want to chat again just post and I will reply soon as,
god bless hun n tc