Forum

when does dx sink in??

hi all put a post on a few days ago re driving license…thing is when filling it in i turned the page over and first illness on form is MS and yes i had to tick it…after that i think it sunk in what is really wrong as have been 16 months waiting on a firm dx…just wondering when did everyone else have the moment when they realised what it meant to have MS?

thanks again

barry

Hi Barry, I was dx 6 yrs ago next month, it took me a long time to admit to myself I had ms. I think looking back It actually sunk in when I was struggling with work. My company were brilliant and moved me to a home ( I was an assistant manager of a residential home for young people with learning difficulties) that was only a couple of miles from where I lived. Previously I was driving 50 miles to and from work everyday. I am still with the company and I now manage 2 very small homes and I get fantastic support. Both homes are disabled friendly so I feel I am very lucky. Sorry for long reply but there really is a life after dx. Take care. Karen

Writing to the DVLA, I think. Although it felt as though I was writing on behalf of some other poor woman, a bit.

Alison

x

I always thought that I was quite calm and phlegmatic about the whole thing but there have been a few “OMG this is real” moments eg:.

  • Having to “admit” MS to the DVLA (even though I hardly ever drive now anyway)

  • Applying for my blue badge (which I now realise that I delayed doing for far too long)

But, the worst moment (but the funniest too tbh) was last week when an OAP - who did not look in the best of health himself - stopped me as I was carefully picking my way across a treacherous local pavement with my stick and also holding Dai’s hand and said “Oh you poor woman” to me and “What is the matter with her?” to Dai.

My first piece of unsolicited public sympathy and my first “does she take sugar” moment. A real double whammy :slight_smile:

Diagnosed last year with a quick diagnosis (only took 8 months all told) but went into work the day after and actually saying “I have MS” to my close colleagues and boss. Broke down in tears. That was the hardest moment so far.

Hiya Barry

I had nursed folk with MS. I also have various friends ‘in the trade’ (physio, pharmacist, Dr) so when my symptoms appeared I strongly suspected it was MS. 11 attacks under 2 years and MRI soon confirmed this. It was a relief to get a name for the many things that were happening to my body that didnt appear connected.

If you are asking re a specific thing that made me realise this was ‘serious’ then it was the morning I couldnt brush my teeth! Carers were in x4 daily to attend to my every need but it was being unable to brush my own teeth that upset me the most! Intimate washing, being dressed and fed I could cope with! I now have an electric tootbrush that makes life easier-I manage to get it in my mouth then it does the work!

During the 7 years that I have been diagnosed I have met many folk with MS-all with varying degrees of disability and it is through sharing experiences with them and giving/offering each other support that I am in the happy place that I am today

Ellie x

AFRAID IT IS STILL SINKING IN BRAIN STILL THINKS I CAN WALK FOR LONGER AND THIS IS AFTER 8 YEARS

only just sinking in since Christmas and ive been ‘suspect M.S’ for 15 yrs and diagnosed for 2 yrs. but im a stubborn ol bird

good luck, take your time.

lots of hugs

BCxx

I think it’s always a work in progress. I was dx in April 08 (yikes… that makes 4 years next month!) and yes it has sunk in, but then another symptom comes along or things progress a bit (I’m ppms) and it takes some time to sink in again.

The other thing I find is that even after a good few years of symptoms I only need a day or two of feeling good to, at some subconscious level, believe that the ‘feeling good’ will last. When I wake up on the 3rd day feeling crappy again it still comes as something of a shock.

So after these 4 years I still get the "OMG I’ve got MS!!!’ moments. Admitedly far less than at first, but I still have them. It sort of still comes as a shock once in a while.

Pat x

Hi

Still sinking in for me too. The date 6th April 2011 will never go away especially as all came out of the blue 5 weeks of symptoms, 2 MRI scans thinking it was disc problem hey presto diagnosis.

I am fine most of the time but there is always the odd moment when it hits that things won’t quite be the same again. My moment was phoning the insurers last week as we are looking to move home and our financial advisor told me to phone them, I thought what’s the point so delayed it as I am still working full time, driving and from the outside I look fine! I think sometimes that bit is the hardest that people can’t see the fatigue and headaches. Although I keep saying to myself shut up and get on with it, if this is as bad as it gets be grateful as if I start thinking about what might happen I will end up there alot quicker.

I finally phoned them on Monday and after 45 mins of talking to them lots of feelings were brought to the surface. As did my little girl saying to my husband when ‘Mummy takes me to the beach can we play tag’ and my husband saying ’ No darling Mummy can’t run around but you can do sandcastles with Mummy’.

My left leg is still a bit clumpy at times so I wouldn’t feel safe but it has improved since starting phsyio once a week.

I hope you have lots of lovely people around you to help you on those days when we feel like our worlds are upside down.

Tracey

there is no right or wrong way to digest your dx I had been misdiagnosed since 1993 with a stroke, which in 2006 was given a firm dx with ms, was told oh by the way its been ms since at least 1993, so I went into mega denial, my neuro even showed me my mri xrays as I kept telling him you might come back in another 13 years telling me you have made another mistake he told me no that will not happen, that why he showed me my xrays, it helped a little but I came out of denial in 2010 while I was on holiday, it made me realise that not using my equipment it was making my life a living hell,

it does still annoy me as when I get new symptoms, I do try and forget about it but then it bites me on my behind to let me know its still here with me.

Al x

I’m still in denial, and I had my first symptoms in 1996, diagnosed in 2001. Recently things have really been misbehaving, and I’m about to start Tysabri but I still hate to think I have MS. I’ve always worked extra hard and felt like I have more to prove. Now I’m going through the disciplinary process at work as I have not worked in 6 months, and its all starting to stress me out again.