Advice for a newbie please ?

Hi there, I’ve had optic neuritis 3 times in two years and one episode of numbness in my left arm lasting 6 weeks. I’ve had 2 mri’s one of brain one of spine all normal EP studies which showed a delay from eye to brain. I saw my neurologist last week and there is still done weakness in the left arm. He said that statistically I have ms, but it was up to me how far to push for a diagnosis. I’m not sure what to do! He wants to re scan me again in 6 months and ? Lp. I am 42 with 3 young children and hence a busy life… Not sure what to do next! Any advice would be so appreciated! Many thanks

Hi Ballison,

Your neuro sounds quite old-fashioned!

In the days before treatment was available - and before anti-discrimination laws existed in their present form - it was sometimes thought kinder NOT to diagnose a patient, because (a) there wasnt anything that could be done about it anyway, and (b) it might prejudice their chances of getting a job, a mortgage etc.

This situation is NOT one that prevails today. You can’t be turned down for a job or a mortgage because of MS, and what’s more, there ARE treatments available.

So really, it’s very difficult to see what the negative would be of pressing for a diagnosis and gaining access to treatment (which you don’t have to accept - I didn’t - but having the option is a start!)

True, you would almost certainly experience difficulty getting critical illness insurance or life insurance following an MS diagnosis, BUT, if you’ve already been investigated for it anyway, to the point it’s been pronounced “statistically likely”, that is already enough for most insurers to turn you down as an unacceptable risk. So getting a confirmed diagnosis wouldn’t make much practical difference to whether you are insurable.

The only other downside I can think of - if you’re a driver - is that you’d have to inform the DVLA and your motor insurers. But it doesn’t usually mean you are banned from driving - only that your licence is exchanged for a 3-year one, which means your fitness to drive has to be kept under review (not unreasonable, considering it’s an unpredictable illness). Insurers, whilst they DO need to be told (otherwise it could invalidate your insurance) are not allowed, by law, to hike your premiums. So there would be no practical effects of them knowing.

I was diagnosed at 44, after (with hindsight) not being well for years really.

I do sometimes wonder if I might have been better off not knowing, as I was still able to kid myself it was age, or hormones, or something else not too serious. Sometimes I feel I was better able to tolerate my symptoms when I still didn’t know what they were.

But, in your case, even the “ignorance is bliss” argument doesn’t have much going for it, because, unlike me at the time, you’re NOT ignorant of what’s going on. You’ve already been told it’s likely to be MS, so you won’t be able to use the trick I used, of pretending it’s something harmless.

I really can’t see why your neuro would be suggesting leaving it as a suitable course.

With me, it was the other way round: I was tempted to leave it, but he persuaded me not to, explaining: “look, this may never happen again, or it may happen again and be much the same, or happen again and be worse. We would very much like to know what it is now, so that IF it gets any worse, we’ll already know what’s the matter with you, and won’t have to waste time finding out!”

I could sort of see the point, so although part of me would rather not know, I reluctantly agreed to further investigation - and was duly diagnosed.

On the plus side, if you already have a critical illness policy, it is probably one of the conditions that pays out, so you could receive a windfall, or get your mortgage paid off, as a direct result of being diagnosed. If you do have such a policy, it won’t pay out on: “statistically likely”, though.

So another good reason to go ahead and get diagnosed, if there could be money in it!

You will not be a different person than you are today, nor have a different illness, just because somebody slaps a name on it.



Hi Ballison, Tina has given you good advice and there’s not a lot more I could add except it’s good to put a name to what is wrong with you so I would push for a dz. Good luck Janet x

P.S. That should have been Dx Janet x

Thank you Tina and Janet such good advice! How are you now tina? He did mention driving saying he knows I need to drive etc… I just felt like he dropped a bomb but then left it up to me? I’m a bit confused because the mri’s were clear as to whether all these tests are necessary in a way…when I asked him what he would do he just laughed! Would you always have lesions on mri’s? He’s leaving me now for 6 months to see what happens and then rescan, it’s all very scary! Feel Like a bit of a drama queen when i tell family, they are just like oh it’ll be ok it’s not definite yet which I know is true in my head but still scary isn’t it?! Tx

Hi, You are not a drama queen and take no notice if anyone says you are. Remember it is you who is experiencing these things and not them and they can’t possibly understand your pain. Janet x

Hi Ballison,

It seems, that most people with MS symptoms are so releived when they have a clear and final MS diagnosis. Many are keen to move on with a peace of mind. It all depends what you want out of this. Like Anitra states, for some, it is better not to know and just bumble along. I, myself have yet to see my neuro and get a proper diagnosis, but I’m keen to push on and get to the bottom of my condition, how ever long it takes. In my case, I am in chronic pain and bed ridden. My illnesses have progressed faster than I expected, and time and energy is of an essence. No matter how hard it is, I always feel it is best to get things sorted out, 'as soon as you can - while you still can '. Noone knows whats round the corner - surely its better to be ahead of the game and in control.

I would also say it depends on the pace and severity of your condition, on how much it interferes with your daily life. Obviously its important the correct dosage, type of medication and treatment has been prescribed for you and this will depend on the neuros findings, your MRIs and medical tests. By keeping the appointments rolling, you would also be kept up to date with the latest in the medical world of MS … everything is changing all the time. This can be very refreshing and uplifting for patients.

Its always important to get the balance right in life, even if you are a busy Mum. Remember, your well-being and health means everything to your family. It makes sense to get the best help, advice and treatment that you can for your body, … cos you are worth it. Most illnesses are best caught early, to prevent further problems, slow things down and some can be stopped altogether. There is no time to stop and noodle around, infact your neuro should be encouraging you move forward and get these tests done with ease.

Knowledge is power, we should all know as much as we can about our bodies (in sickness and in health) so that we can give ourselves the best shot in life, and nothing feels better than knowing we got ourselves covered.

I say …give a good strong PUSH …for as much as you can.

Now I sound like a maternity nurse. Nevertheless, hope I made some sort of sense.

almond xx