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What Now?

Good evening everyone ok this will be a bit long winded but hoping for some advice.

So my partner 7 months ago was taken into hospital with a suspected stroke because he became paralysed down the left hand side suddenly but had experienced pins and needles, tingling and numbness for around a few weeks prior to the onset. After a ct scan and an mri brain scan which showed lesions on his brain he was told he had possible ms and further tests would be required. He was given 3 days course of strong steroids and fluid was taken from his spine he was discharged from hospital 2 weeks later as he made progress with his mobility.

He was also sent to have a mri full spinal scan and a eye test. The results from tests where that his blood tests where all normal, the spinal fluid showed positive for obligoclonal band in csf only. CSF protein glucose were within normal limits. His spinal scan should only wear and tear of his back (he does suffer from back pain after old football injuries in his younger days) but nothing to do with ms. The eye test showed slight inflamation but incluclusive of ms. Then at 6 months he was sent for another mri brain scan. So last week finally he had his 2nd appointment with the consultant we went to this appointment expecting to be given a definate diagnosis of ms but that was not the case. We were in and out of that appointment in less than 10 mins.

The doctor basically said that the mri scan showed no further activity in his brain and that a few of lesions had faded. So what did that mean? He then said well you have had a clinical isolated demylination event probable ms. There is no predication as to you ever having anything again so basically just get on with it. The doctor said he would not look to see him again and no medication or treatment would be needed. So where does that leave my partner I asked as he is no longer working because he had to give up the job when he went into hospital as it was an offshore working on the rigs but he did not have a contract so when onshore he was effectively unemployed.

I asked the doctor what does my partner say to a future employer what his medical condition is and he said what he said before a clinical isolated demylination event probable ms. So basically my partner has no idea what the future will hold for him and really how he goes forward. I just wanted to see if anyone else on hear has had this experience and how they dealt with it in the long term what are his prospects of it turning into definate ms. We are both feeling a bit lost with it all.

Regards

Sharon

sharon.

the reality is pretty much what you have been told i am afraid; no one can tell you what the future holds.

your other half got ill and then recovered. this is the one and only time this has occurred to him and it’s an ‘isolated’ event. if it happens again; ie. a bunch of whacky neurological ailments come along, and docs subsequently detect lots of lesions on the spine / brain etc., then you will get the sorry news of a confirmed case of MS.

this is the ‘wait and see’ process of diagnosing MS - ie. one flare up is not enough.

I have had two, maybe three of these flare ups over the last few years. this makes my situation NOT isolated and thus MS. when will i likely suffer another flare up? i don’t know. no one knows. no one can know. it might never happen. i might get hit by a bus before it does! the best thing i can do, is carry on regardless, take my meds and my vitamins and adhere to a healthy (stress free) lifestyle to stack the odds in favour of NOT having another flare up.

the fact is, MS and similar illnesses are crafty, secretive little buggers that never let you know what sort its going to be, how bad or how frequent it will turn out, until it actually arrives one day! this can be depressing and give a sense of hopelessness. BUT… not even the healthiest and happiest person can possibly know what will happen tomorrow and so truly, just get on with this thing call life.

good luck and better health!

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Just to add info on medication to this. There are now drugs that slow down the progression of MS and reduce the number of attacks. These are all serious drugs, with serious side effects. If your partner is unlucky enough to get more attacks, he may be put on one of these drugs. He won’t get them after one attack, when the second MRI shows lesions fading rather than new lesions being seen. And honestly, he shouldn’t want to have them when he may never have another attack and never have to take any medication.

I think, if your partner needs to give an explanation to a possible employer of why he left his last job, he should say what the doctor told him, that he had a “clinical isolated demylination event” and that he’s now completely over it, or pretty much over it, or whatever is the truth. He doesn’t need to mention MS and if they ask him if he has MS, he should say something like, the doctors haven’t told me I have, just that I’ve had an isolated event. You might want to do some research to find out how common such “clinical isolated demylination events” are (then he can quote it, if they are common).

I have heard of several people who had a “clinical isolated demylination event” or something that looked like that when they were in their thirties (we’re talking about stuff that happened before there were MRIs) and then had no more problems until they were past retirement age, or no more problems, full stop. I hope this is what your partner experiences and that he will be able to get another job.

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After my first relapse (as it subsequently turned out to have been!), I was told to go away and forget all about it and hope that it was a one-off. The term CIS was not used, but the neurologist did say that there had been a de-myelinating event, that there was no such thing as single sclerosis, and that he thought it best to let sleeping dogs lie and not investigate further (I hadn’t had an MRI at that stage). Over and out.

So that was that. Life got back to normal (easy for me, because I hadn’t had any time off work and had a permanent employment contract…) Well, I say normal. Funny sort of normal when you know in your heart that you quite probably have MS.

Unfortunately, my second relapse arrived a couple of months later. MRI, lumbar puncture and dx happened fast after that.

But it is by no means unusual to be sent away to get on with life after a CIS. After all, there is a good chance that nothing else bad will happen, and hurrah for that. But it’s awfully hard when the CIS has had such a bad effect on employment/income. That’s a real blow, and I really feel for you.

Alison

Yes, unfortunately the advice given is all spot, its a kind of suck it see scenerio.

My 2nd replase (and subsequent definate diagnosis of MS) was just after 2 years from the first.

From day one, even when I could barely walk I haven’t let this thing take over my life, my moto is “MS isn’t something I have to live with, its something that gets in the way once in a while” In a bizarre way its made me more positive about life and made me see that we don’t live forever, as Paolo says the healthiest person could be struck by a bus tomorrow. I do things now that perhaps I wouldn’t have done pre MS, daft things like going on rollercoasters with the kids or in the pool, they would have been “husband jobs” before.

Hopefully, eventually your partner can find this happy place, dont stress about appointments and answers it really doesnt change anything anyway. Im always upfront and talk about my MS, but dont bore on about it either. I recently got a job as a trainee holistic therapist as its a path 'Ive gone down after being diagnosed, having crystal massage and indian head massage, its an exciting new venture for me and I know I’d have never done this had I not got MS.

I recently had a particular bad relapse in the form of optic neuritis, it was the worse episode 'Ive had, the headaches and eye ache was almost unbearable at times. My little boy who is 7 went to a birthday party and the magician there said he could make a wish. When I asked him what the wish was he said said he wanted to make my poorly eye go away so I asked him why he didn’t just ask for my whole MS to go away because that would cure my eye anyway. His reply brought tears to my eyes he said I don’t want your MS to go away because you have been a much more fun mum since you had it. I think that tells us we sometimes just trip through life taking everything for granted. I’d say to your partner, take each day as it comes, get back into the workplace, do one fun thing everyday and if it is MS and it comes back he’ll be prepared for it, deal with it and move forward with more tests etc. I wish you both well.

Jane x