Hi all I have been under investigation for ms since June 2012 ( I’m unsteady on my feet ,get easyly tired ,visual problems ,twitching muscles ) I had a MRI scan in June that showed 5 lesions but was told I wouldn’t be diagnosed until I had had a second episode my mum also has ms My symptoms have since got better ( I can walk with one stick all be it not very far ,visions a lot better but still unsteady on my feet ) I have been off work since June ( I work on a outdoor pig farm ) I had a second MRI just before Christmas and have just received a letter from doctor saying that there has been no change to the scan no new lesions. But the old ones are still there ,I don’t know what to do as I still think I am unfit to go back to work ,will they force me back ? Should I quit ? If the nuro doesn’t diagnose me after second MRI what is the future ? Always worrying about haveing a second episode ? Sorry to go on I’m just soo worried as isn’t wife about what the next steps should be

Whatever you do, don’t quit your job. It’s not a diagnosis that deems us unable to work; it’s our symptoms. So if you aren’t able to work, you aren’t able to work - no matter what the current diagnosis is.

The Equality Act covers anyone with long-term disability (regardless of diagnosis) so if you are under pressure from your employer to go back to work when you are not fit to or if your employer is not willing to make adjustments to enable you to stay in work then they are potentially breaking the law. The Citizen’s Advice Bureau or Access to Work may be able to advise you on how best to proceed.

The fact that you have no change to your MRI scan simply means that nothing has changed: you still have “probable MS” (the 5 lesions suggest this anyway) and so the neuro cannot diagnose you until you have another attack or have new lesions on your MRI. So the future has two possibilities: you may never have another attack or you may have another attack, but there is no way of telling when (it might be soon, but it might not happen for 20 or 30 years or even more). This uncertainty can be bad enough for it to influence everything someone does and thinks, if they let it. The only way to deal with it, in my opinion anyway, is to accept that we none of us know what the future holds (even those who are perfectly healthy), to know that whatever happens there is sufficient help available to make sure that we will cope and to make the most of life while we can. And even if that second attack happens and you get a diagnosis of MS, it’s not the end of the world - yes, it sucks at times, but life really can still be good.

Of course, this is all very easy to say and less easy to put into practice :frowning: I had help to come to terms with it from an excellent counsellor and I would encourage anyone going through this to do the same. Being able to talk to someone who doesn’t judge and who you can’t upset is a huge relief!

Karen x

I agree, karen. I am finding my CBT telephone sessions a huge catharsis. Xx

hiya…gosh you have been through the mill… hang in there and try and keep moving forward best you can… it’s harsh having to stay in limbo land unless another attack happens and as rizzo says…you may not have another…or it may be some time before you have another…which could also vary from the recent one… if you can see someone to talk to who is impartial then I would go for it…they can help you find ways to live with the situation…as for work then they have to make any necessary changes to you your job in order to continue working even without a dx they are legally obligued to do so…if you can get a letter from the consultant for your boss or hr then at least they too would be more aware of what’s going on and it would help them too…if you can keep working in some capacity it will help…even on the bad days…a sense of purpose is vitally important…plus it will increase your self worth and as Karen says don’t let this situation rule you or your life… I am not dx either unsure if I have ms…I don’t meet the criteria but. that said there is unofficial talk of poss ms …the criteria is there for a reason although how they did dx before MRI etc is beyond me…it has its place but as you will know lesions don’t always show up and if they do they don’t always correlate to symptoms…but then again they can…that’s the nature of ms… stay posiiive…and it may be that they will continue to scan you every so often…and if you feel you may be having another attack then push to go back to see the neuro… em x