I'm not sure how I feel

I’ve been in limbo for ten years next month. I’ve had 3 clear mri scans (about 6 years ago) but my lp was positive for o bands and my vep test was abnormal. In this time I’ve seen two neuros, one who said he was 99% certain I had ms and the other who said i was exaggerating my symptoms and I was ‘a medical mystery.’

So after I was discharged by the last neuro I just tried to ignore the symptoms and hope they went away. Unfortunately they proved to be rather stubborn, culminating in my arm going numb from my finger tips to the top of my head last christmas. So I decided it was time to get back on the diagnosis wagon this year and saw my gp in July. He was quite happy to refer me to another neuro and I finally got an appointment through for last week.

I really didn’t know what to expect. I was terrified I’d be discharged as an attention seeker again. The new neuro was lovely. He examined me, found some problems,dictated the letter he was going to send to my gp in front of me and made sure I was happy with what he said and referred me for more mri scans. At the end of the appointment he asked if I had any questions so I asked him if he thought I was making it all up or if it was all in my head. He said definitely not. There is definitely a problem and he more or less said he thinks it’s ms.

For the past six years all I’ve wanted is for someone to say they believe me. I thought I’d be jumping for joy. I just feel numb. I’m scared he’ll say I’ve got ms. I’m scared he’ll say I haven’t got ms. I’m scared I’ll still be in limbo after the scans. I’m scared the neuro will leave before I see him again. I never thought I’d react like this. I don’t see him again until June and some days that can’t come quick enough and some days it’ll be here far too soon.

Sorry for the rambling post. I just needed to put it down somewhere.

I hope you’re all as ok as you can be and that you’ve had a good Christmas.

Hiya hun,

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

Anna x

Change is scary. It doesn’t matter if it might be for the best or for the worst - it’s the unknown. However, a diagnosis of MS is just a label - your body doesn’t care. And you’ve been dealing with this thing for a long time now - if you do get a diagnosis this time round, all that will happen is that you will have something to be able to explain things to people; your body will just keep doing what it does. So, hopefully, a change for the better :slight_smile:

Karen x

Hi ya

I think most of us understand exactly how you’re feeling right now. The other plus to receiving a diagnosis is that you’ll then be in line for the right kind of medications and support. No one wants ms or any other kind of illness but the ‘not knowing’ is so much more difficult in more ways than one. Hopefully this neuro will get to the bottom of things and will be in a better position to give you some firm answers. Once that happens you can start to move on with the rest of your life. It’s not easy but you will get there.

Good luck

Debbie xx

Thanks everyone for your kind words and support. I had the copy of the neurologist’s letter this morning and seeing it all in black and white has made it a bit more real. I think my main fear at the moment is that after being so positive there’s definitely something wrong, he’s going to change his mind before I see him next. At the moment it’s sort of a case of ‘so near and yet so far’.

Having seen him, the neuro has already suggested possible treatments that my gp didn’t suggest, so i know that if the symptoms get to a stage where I can’t cope with them, I can get something that may be more effective than things I’ve had before. So that’s already a positive outcome.

I do want to know what’s wrong but after so long of thinking of myself as a lazy attention seeker I think I panicked at the thought that there really is something wrong. I’m going to try not to let myself think about it until after the mri scan. Nothing has changed and as you all said, the only thing that will change with a diagnosis is the name of my illness. I’ll think about that when I know what it is.

Thank you all again. I hope 2012 is good to you all. x

Blod I can relate to your story. (I did think i had answered your post but it didnt appear?)

Anyway I have been in limbo land for 5 years. BUT I have had positive VEP for optical neuritis, and MRI showed lesions in 2 places T1 and C5. I had a lumbur puncture which showed o bands but unfortunately my blood test at the same time showed inflammation which is a negative for MS, but the inflammation could have been a coincidence.

Over 5percent of people with MS can have negative MRI, and the same goes for LP too.

The point should be anyway why did you have positive LP and ABNORMAL VEP tests? Its madness that these things are just left, the same as for me. I am still ill, still struggling and still going down hill everyday bit by bit drip drip my mobility is going.

My GP believes I have MS but her hands are tied, and I have to say that she is very good and will offer me anything I need that someone with MS would be given, and my neuro even offered me I.V. steroids, and I have a letter which he wrote to my GP and said he is happy to do so because of the positive VEP tests and lesions that were seen on my spine. So basically I missed out on my MS label by some inflammation showing up in my blood go figure. Still no one has said why it was there in the first place, seems it must be normal lol…

It is good to be taken seriously and so you should have been from the get go, just with your LP and VEP test results.

It never ceases to amaze me how cavalierly we get treated by the people who we should be trusting with your health.

I really truly hope now you can find some peace and get treated with ever comes up.

Big hugs Maria