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,
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.