What was it like when you were diagnosed?

New diagnosis and before diagnosis
1

Hi all,

Just curious about how other people found out about their diagnosis.

I had seen my consultant a few times about my burning legs and other stuff and the appointments were very quick with him basically saying ‘dunno’ after various test results had come back. There was even one time when he walked through whilst I was having my blood pressure taken and said the results were inconclusive and just kept walking!

When the big day came my wife happened to be with me as she was convinced that I was useless and not pushing them or asking the right questions and she was probably right. Anyway he invited us into his office and pulled chairs out for us to sit down and I thought ‘hello, this is going to be different’. He then proceeded to show me my brain scan. My initial reaction (same for my wife) was ‘ Jesus Christ, I’ve got two massive brain tumours!’ he then pointed out these were my eyes. Then he sort of scrolled back through the images and came to two or three bright spots and said these were indicative, along with my medical history of Multiple Sclerosis. He then said other words for a while until my wife asked ‘are you saying he’s got multiple sclerosis?’ To which he replied ‘yes’. I didn’t really think anything then, but my wife started crying. Having come into a small amount of contact with people with MS a few years ago through my work (I am an assistive technology assessor and installer) I started to reassure her that it was OK and that I had met a couple of people who seemed OK. Turns out she thought it was terminal which the consultant reassured her was not the case. He then gave us a couple of pamphlets and we went on our merry way.I noticed as we left his office that there were a couple of nurses standing by outside and it made me wonder whether this was a bigger deal than I thought and maybe other people ‘got it’ and were more upset than me when they are told.

Ultimately it became apparent that it took me a few months to accept the diagnosis. I genuinely thought that they had jumped to an incorrect conclusion and that I just had something wrong with my back that they had missed. I did tell people and felt I had to tell work. They have been very supportive and it hasn’t really made any difference to anything, I just have this chronic pain in my legs that I have got used to.

The one thing that has changed is that we had a couple of referrals come in for people who have ms and are in a much more advanced stage than me and my colleagues agreed that maybe it would not be a good idea for me not to do the assessments. I am keen to meet and speak to other people with this condition but not in my work capacity.

Anyway, just curious about how other people were told and how they reacted.

Thanks in advance,

Derick

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p.s did anyone else feel a bit annoyed when they tell you you’ll die with it but it won’t kill you. I was I feel it’s a bit bloody rich that you get diagnosed with something pretty big and then realise that your going to have to get diagnosed with something else at some point that’s even bigger. I felt really annoyed about that. Stupid really.

2

It took 2 years for me to get diagnosed. I spent those 2 years researching it because I was so sure I had it. When the time came, I was sort of unfazed because I knew it was coming. I was relieved in some ways because it meant that my problems were finally given a label. It’s only when I started telling people and them freaking out that I really realised that it meant I have this life long illness and am going to be on meds for the rest of my life.

“Did anyone else feel a bit annoyed when they tell you you’ll die with it but it won’t kill you” No way, this is a very strange thing to tell someone who has just been diagnosed with MS in my opinion.

Nora

3

Derick

Blimey, that absolutely sucks as a way to tell you about your diagnosis.

Your poor wife. How horrible for her. I often think it’s worse for the partner than to be the person with MS. And this was certainly a case in point.

My diagnosis was very different. I was an in patient for all the MS tests in 1997, MRI, LP, VEP. Then one day a doctor came and told me I had a lesion in my neck, but not to worry ‘you don’t have MS’. They gave me a 3 day IV steroid course and discharged me.

I thought for a long time that I was a medical mystery. Suffered through optic neuritis several times, legs that gave way a few times, blamed some things on alcohol and others on clumsiness, until the Internet joined my life together with a humdinger of a relapse that sent me back to a neurologist. He asked me, ‘what do you think is wrong?’ I answered ‘MS’. He said ‘so do I’. But then he was in possession of the discharge information from the original hospital which said I had Oligoclonal bands in my CSF, two lesions, and clear evidence of a ‘demyelinating condition’. But it also said ‘ we won’t mention MS unless she does’.

This was 2002.

I think the ‘you don’t die of MS, you die with it’ phrase to be bloody annoying. And I bet all those people who die of complications resultant on their MS hate it too. Or would do if they knew about it. Most don’t I suspect.

Sue

4

Hi there, I suspected ms and expressed that to a gp who laughed and said no. Then another gp referred me to neurology. Seen him once, sent me for MRI, went back to see him again, 1.5 wait in clinic only then To be told my results had not been sent over. A phone call later and he look at me and said “ not good news, looks like MS”

the nurse across the room mouthed “ I’m sorry” neuro said he was retiring Friday so not much he could do but follow ups would be arranged, then I drove home alone from an appointment no one knew I had that day. However, when Home my husband took one look at me and knew I’d had the result.

Since then I feel ive been well looked after,

hops you have too!