Possible MS Diagnosis - some practicalities(9 Posts)
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:-
1. 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.
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).
First I'm very sorry you are dealing with such uncertainty at the moment. It must be extraordinarily stressful.
Second although I understand why your mind is racing ahead, I think you are being very premature. You don't have a diagnosis of anything yet. Even if you are diagnosed with MS it can be a very very slow moving disease. It can also be a fast moving one but that is much rarer.
My knowledge of MS comes from 3 friends who have it.
The first was diagnosed at about 26. He was working for a large multinational in a highly technical and intellectual role. He continued working for them and increasing in seniority for 20 years. They were fantastic with their support.
By about aged 32 he needed a stick to walk for long distances. He wasn't in a wheelchair until about 40+. He gave up work aged about 42 on a fantastic pension. He still drives and looks after the kids at home aged 50.
My second friend was diagnosed 4 years ago. He continues as a professor in a uni 3 hours from where he lives, driving up and down 2ce a week. He uses a stick for walking long distances but has no problem with stairs etc at home.
Third friend is a barrister, diagnosed 10 years ago with a very fast moving ms. She is in a wheelchair, will say her brain works more slowly and gave up work a few years after diagnosis. Finds it difficult to write. All if this not compatible with her self employed career. Swims vast distances and has an all terrain wheelchair she uses for long hikes in the countryside.
So there are lots of ways it could go - you could spend years with nothing more than periodic tiredness and muscle weakness. I wouldn't make any drastic changes yet. I certainly wouldn't consider leaving my job - your mind is unlikely to be affected and physical disability can be worked around.
I wish you the v best of luck.
sorry that you are grappling with these possibilities.
I don't have relevant experience but what I would say is that stress is present in very many jobs, and it is IMHO even more stressful to be in a position where you cannot control your work pattern, or ask for adjustments, because you are recently arrived or are in a more dispensable role. If you are doing a pressurised difficult job now, it may be that relatively few people can do that job which makes you very valuable, and that you may be senior and/or valuable enough to require changes to be made if you need them in due course (eg reduced hours).
also, do not in any way underestimate the stress of money worries. I would definitely stay in post, and see how it goes.
Thanks both for this. Celestial, it is very interesting to hear the differnet examples. I appreciate the illness can have different trajectories, which is part of the whole uncertainty. I am mid 40s, so it would be a relatively late diagnosis. I guess your barrister friend is the nearest example to my job although not quite the same self-employed status. A comparative job to what I do is partner in a large law firm or accounting firm. DH and I are both the type of people who can bury our heads in the sand and I was not sure that was fair to the DC since they may be affected too. I genuinely am able to be positive and not think about it most of the time (more so than I expected when the neurologist first told me the position), so I guess I was concerned to think through things while in this positon given the risk of complete loss of ability to be rational if diagnosed (at least for a period).
Two years ago also in January I had Optic Neuritis, I quickly had a brain scan which showed I had a very inflamed optic nerve, but no legions on my brain. From the scan the neurologist said he thought that it was more than likely that I had MS, as I am the age where it typically becomes diagnosed, and have previously suffered with ME, (it seemed like it was more a gut feel from the doctor, rather than being based on the actual scan). I was too terrified to have a lumbar puncture. Like you I have a young child and had the same terrible thoughts going through my head. It was a nightmare. BUT - I have not had another "episode" have been in good health since. I do not have MS contrary to my neurologist's initial thoughts. He see's me every 6 months, if I had further sympoms I would have had a further brain scan and lumber puncture. Be positive - it is still very possible that you might not have MS. Good luck.
So let's assume for the sake of speculation that it is MS.
If you are at partnership level in a big firm you have jolly well earned the support they should be well able to give. Re income payment - presumably the certification of being "unable to work" will come from a medical professional. I should think any consultant faced with a mature high achieving successful professional like you would say that you are best placed to know if you are unable to continue to work. I can't imagine you saying "I just can't do it any more" and them arguing with you. Obviously it depends on what your policy actually says but I probably wouldn't worry about that at this stage.
Re moving house - well, year 5... I would guess it would be very unlucky if you found yourself needing a different property in the next 5 years. Longer that that- who knows? I would say you would need to weigh up the advantages of eg moving to the countryside sooner rather than later so no school move is necessary against the additional stress of a house move and additional commuting time. Again I would be tempted to stay put. My 2nd friend has a 12 year old daughter (so 8 at time of diagnosis) and she was quite upset and rattled by his diagnosis. Maybe you don't want to many changes all at once for her sake. Also lots of kids move for sixth form and you might be better able to make the right decision for you if it is just a little bit down the line - you'll know much better the shape of your illness, how you are coping with work, your needs etc. However I could see arguments the other way. It is one for you to work out as a family I guess.
But NOT now! Because I hope you will never get the diagnosis! Although I think you are v sensible to be chewing these matters over in your mind....
Thank you all for your kind and reassuring words. I hope i do not need to come back with more questions...
Firstly to say that I'm sorry that you're going through this. Secondly, I would not assume that you have MS. Did the neuro find a lesion related to the eye/face problem on your MRI? Or are they just expecting to find something because the symptoms are very MS like?
I had the symptoms you describe in two separate episodes, plus other neuro symptoms (nystagmus, vertigo, etc with the facial numbness). I was diagnosed with optic neuritis but not given an MRI (NHS). I was told I probably had MS but that they wouldn't give a confirmed diagnosis until another episode happened. I've subsequently had a private MRI and been given the all clear (after 8 years of believing MS was just round the corner).
So I've been through weighing up the kind of issues you are dealing with.
The advice I would give to you is to make decisions on what you want. Do you enjoy your job? Would you like to carry on doing it? Would you rather live a simpler lifestyle? If yes, you might want to look at how to make this financially possible. But do this for yourself, not just because of the potential MS. If not, then just carry on. There is surely a transition phase between being able to work and being incapacitated to the point where your income protection policy kicks in. If you need time off because you are ill, then your workplace needs to make adaptations. You would do well to take steps to reduce your stress but this can be through lifestyle modifications rather than packing in your job. Giving up a job you enjoy because you are afraid the stress may trigger a relapse could be inherently stressful anyway and the income protection policy is a fantastic benefit that provides a great deal of financial assurance.
On the move from your current property, your mobility is unlikely to be affected so quickly. If you are thinking about moving to an area out of London you need to weigh up things like access to public transport, proximity of school, the toll that the commute might take on you and your dp. Again, if you are yearning to move out of London, then look into it, bearing in mind potential future mobility issues. But don't move now on the assumption that MS will affect your ability to climb the stairs. It may not.
You are right to be mindful of the future, but no-one with MS knows what the future will bring. And you haven't been diagnosed and may not be.
Best of luck and feel free to PM me if you want to talk to someone who has experienced something similar.
Schmee, my symptoms were almost exactly the same as yours in a single episode, ie vertigo etc. well. Scan showed one lesion. Your post is very helpful and reassuring. Thank you for the offer to PM you
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