In January, I suffered from problems with the vision in one eye, and also temporary paralysis of the same side of my face (face now back to normal and eye almost back to normal).
I was referred to a neurologist and had an MRI (I have private healthcare through work so all sorted very quickly).
Based on symptoms and results, neurologist has not diagnosed MS (lack of other lesions etc), but suggested I go back after 3 months for a further MRI and lumbar puncture. From what he said and from I have read, I think there is a real possibility I will end up with a MS diagnosis.
I am currently able to get on with life and not dwell on it, although I imagine if I do end up with a diagnosis there will be at least a period when I am a complete wreck. hence, I wonder if I should be starting to think about some practicalities while I am currently in a positive frame of mind. However, I do not want ot be defeatist - I am a naturally positive person (whatever this email may suggest!) and DH even more so.
The 2 main practicalities will are likely to need to address are:-
- Where we live
We are in London (fairly central) and live in a London terrace with lots of stairs. If I am diagnosed, in due course I expect our house will not be great.moving to a bungalow would not be an option where we live, and although we could move to a flat with lift etc, this is likely to involve a significant compromise in space (esp outside space). We could relocate to a commuter area. Natual tendancy would be not to worry about this until we have to, but eldest DD is in year 5 and so if we are going to relocate a good time to do so would be to coincide with her move to senior school ( we would be looking at private probably so would not need to worry about moving into catchment on time etc). On the one hand it does feel defeatist to move before necessary, but on the other hand if we will ultimately need to then it would be less disruptive to the DC to do so sooner rather than later.
- Work
I currently work in a very pressurised, difficult job. I have read that reducing stress is important in dealing with MS so giving up my job and looking for something less pressurised may prove to be sensible. On the other hand, my current job has an excellent income protection policy. It kicks in (after a deferral period) if it is concluded that I am no longer able to do my current job. If I leave before that poitn I would lose it and imagine that I woudl not be abel to get new income protection with a diagnosis. I have a concern that the remitting/relapsing nature of MS in the early stages means that a diagnosis will not automatically trigger the policy, because i may well be able to do the job for a period even if from a stress perspective it is not ideal. So I may be in a catch 22 that doing the job is bad for my health but it is financially sensible for me to keep doing it until my health deteriorates. As it is a company policy, I have seen a summary but not the full policy (and obviosuly do not want to ask for it at this stage). Hence I wondered if anyone else had experience of a typical income proteciton policy and how it might apply to a remitting illness lilke MS (but acknowledging that it will dpeend on the precise terms of the policy).
Generally, I guess I am wonderign whether people with MS (or similar illnesses) have planned long temr ahead or whether you have tended to deal with deterioration as and when it happens (tryign to preserve existign lifestyle until it is no longer possible).
Thanks!