Hey so my partner 8weeks ago was admitted to hospital with a suspected stroke he was paralysed down his left hand side after tests and a mri head scan which showed lesions he was told he has ms. After 3 days of iv steriods and 2weeks in hospitals he was discharged after gaining his mobility back although he still walks awkard and is still feeling numbness. We booked a private consultation a few weeks ago with a neuro as we where told it would be several weeks before he got and appointment through the nhs. Before private app he had a lumber done which camed back showling inflamation but other than that clear. His bloods came back all clear and he also had an mri spinal scan which came back all clear apart from wear and tesr dics lying on nerve. Private consultant looked at the notes from hospital which we had but he did not have access to his mri scans he did some tests on my partner and at the end of the consultation said yes you have ms. We then received the app to go see the nhs neuro so we thought yeh lets go see what he says. He did all the tests again reflexes etc etc had a look at alll mri scans and notes and said possible ms but not definate. So one neuro says defo other says not sure??? Nhs neuro says unless he has another episode or more symptons then he would not says defo ms. The other thing thats was discussed also was my partner worked offshore and has to get vaccinations to protect him from the toxic waste he was working with so he got vaccinated for polio dip and hep b and while he was in hospital one doc said it could be vaccinated related as most of the tests they did came back all clear. When we asked the neuro about this he said no because he got the vacc in oct 2013 and he was not admitted to hospital until march 2014 it was too far apart but he did has tingling and numbness feeling down his arm few months previous to march so could it be vacc related who knows? Just wondering if anyone has had a similar experience where they have been misdiagnosed we are just very unsure what is going on with it all. My partner is gradually getting better each day just hoping its something else wishful thinking on my part on suppose
Yes, of course docs CAN get it wrong - anyone, in any walk of life, can make a mistake.
However, the reason for the discrepancy in the views you have had so far may be that MS is very difficult to diagnose.
Even though your partner does appear to have the “characteristic” evidence of the disease, it cannot be definitively diagnosed by a non-specialist (which was probably who he was seen by in hospital), and even diagnosis by a specialist usually requires two or more confirmed episodes, OR ongoing disease activity for a continuous period of two years or more.
It is possible to have just a single MS-like attack, but never have any more, therefore a single attack is not sufficient to say a patient definitely has MS - which, by definition, has to be multiple. This leaves a lot of patients in what is commonly referred to as “limbo”, or “limboland”, because only time will tell whether this was a first episode of MS, or a never-to-be-repeated incident, that in time, they can forget all about.
It’s not known why some people have an attack that resembles MS, but never get any subsequent attacks, or hence an MS diagnosis. Possibly, these isolated attacks are caused by a virus or something.
Unfortunately, the lumbar puncture being clear “apart from some inflammation” is not as good news as it sounds, as inflammation detectable by lumbar puncture is one of the hallmarks of MS. So a lumbar puncture that was “clear except for inflammation” is not really clear at all, but abnormal. A normal one shouldn’t have any signs of inflammation - alhough MS is not the only condition that can cause an abnormal result.
The blood tests being normal isn’t conclusive either. MS doesn’t show in the blood, so the purpose of these tests is not to check for MS, but to look for anything else that might be causing similar symptoms. Normal blood tests therefore cannot eliminate MS, but do eliminate a lot of other “maybes”.
At the moment, I think it’s too early to talk of your partner being “misdiagnosed”. He’s just in that unfortunate phase when it might turn out to be MS, OR it might still go away and nothing else ever come of it. That is why most neuros won’t diagnose until they’re really sure. It’s not negligence or cluelessness. They need to be satisfied it’s an ongoing thing, and not just some kind of blip, and the only test of that is time. Even if it looks just like MS, it can’t be confirmed as such, after only a single incident.
You haven’t posted in the wrong place, as Everyday Living is a perfectly reasonable place to ask, but if you take a look at the Newly Diagnosed and Before Diagnosis section, you will be able to read many more examples of people who’ve had just a single attack, and so far cannot be diagnosed, as they do not meet the “multiple” bit of multiple sclerosis. Sometimes these people will have a diagnosis of possible or probable MS, but sometimes it will simply be recorded as “clinically isolated syndrome”, which basically means a one-off attack, unless or until proved otherwise.
I know this doesn’t help with your situation, but I hope it does explain a bit more about the difficulty surrounding an MS diagnosis, and why it’s often not possible to get a yes/no answer straight away. It doesn’t help that there’s no single test that can prove OR disprove it, so diagnosing is a bit like looking at an incomplete jigsaw. When do you have enough pieces to be “sure” what the picture is? If you guess too soon, you might be wrong.
Hi I had an attack last June just after having my baby got told CIS Then had another attack requiring hospitalising and got dx. I asked if I needed another scan and got told no they had more than enough evidence from the scans. Hope it will be a one off for your other half x
Hi Tina thanks for your response which has made things a bit clearer to me. what my concern is now though if this is just a one off incident then how does he go about telling his employer? You see he worked offshore on the rigs and was not on a contract so he is effectivley made redundant when onshore or off ill which in his case the now and he does not get paid. So when or if he recovers from this how does he explain to his employer can he go back to work? and what about benefits is he able to claim even though he has not had a dx as we need financial help. You are right its all about limboland the now which is frustrating
Thanks Emfraserburgh I hoep so also xx
Hi again Shaz,
I don’t have personal experience of benefits, BUT I do know it’s how badly the person is affected that determines whether they’re eligible for anything, NOT what their diagnosis is - or even whether they have one. As long as the medics do agree about the nature and extent of any disability, it shouldn’t matter that they’re unable to say for sure what’s causing it - it’s all about the practical effects on what you can or can’t do, not the name of it.
As for work, as a general rule, you do not have to disclose any medical conditions to an employer, BUT there may be certain occupations that are an exception, as I do not think you could have, say, a soldier or airline pilot with a serious undisclosed condition. Offshore work may fall into this category. This question has cropped up before, but I did not know the answer, and I’m not sure we ever found out, because I don’t think the person ever posted again, to say what happened.
Many years ago, before I got ill, I was in the Merchant Navy, and I do know it’s the only job for which I ever required a medical. Of course, times and laws have changed since then - not always for the better. I’m absolutely positive I was still paid while ashore, for example, and would have been entitled to sick pay - had I got sick at that time.
Redundancy and sickness aren’t interchangeable, even for fixed-term workers, so if your partner was “on a contract” when he was taken ill, his illness shouldn’t have terminated the contract, and he should have been entitled to (at least) statutory sick pay, and possibly more, depending on the contract that company offers (some pay a lot more than the state minimum).
If, on the other hand, he was technically “between jobs” when illness struck, then obviously he would not be employed by anybody at that time, so nobody would have liability to pay sick pay.
I still don’t know if rig work is something where it 's OK to keep quiet about a serious or potentially serious medical problem. As someone who has been away at sea, I don’t personally consider it would be a suitable and safe environment for me, now I’m diagnosed with MS, even though my disease has been relatively non-aggressive so far. As things can change quite suddenly (in one case I literally went to bed fine, but woke up next morning unable to feel my feet), I don’t fancy being miles offshore when/if it happens. But I realise whether I’d want to or not is quite different from whether it’s actually allowed.
If a medical declaration or examination is required, I’m quite sure your partner will have to say something. In that case, he can only tell it like it is - he’s had some investigations; MS has been suggested, but there’s not universal agreement that’s what it is. I do not think a large, modern company, such as those associated with offshore drilling would be asking medical questions unless it was legal for them to do so, although most “ordinary” shore-based employers now cannot ask, or at least, can only ask if they make it voluntary to supply the information - e.g. for the purposes of collecting statistics, or to know if the person has any disabilities they might want the employer to be aware of - so they can fulfil their legal obligation to make “reasonable adjustments”.
What “reasonable adjustments” on an oil rig would consist of, I’ve absolutely no idea. I would have thought the challenging environment meant scope was quite limited for accommodating the needs of sick or disabled people, but that doesn’t necessarily mean there’s nothing they could do.
My brother works as an operator in the oil industry and he has regular medical and he’s onshore at a plant. My dad worked offshore but not contract and he had tk pass a medical
Thanks Tina once again you do know your stuff you have been very helpful thank you for taking the time to reply. Once my partner is well again and hopefully gets back to normal then thats when he will look to see if he is allowed to work offshore again as you said only time will tell x