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Advise needed

Hi all. I was rushed to hospital one day at work as i had all the signs of a stroke . Was given a drug to get rid of the clot as they belived it was not on the brain … Cut a long story story short after various ct scans.mri scans . They ruled out a stroke and put it down to adem. so gave me steriods in hospital .and tablets to take at home . Then 4 weeks later get a letter to see doctor. My lumbar punch results are back .so off i go they say that what they have found is that off a person would have with ms.so will have to wait 6 months for another mri scan to see if i have more lesions and if i do then i have ms …!! Now im 34 with a wife and a 2 year old boy … i carnt wait 6 months .after 3 days its wrecking my head. What can i do ? Would going private help? Thanks scott

Hi Scott,

I’m sorry, you’re not going to like this, but I’m afraid you will have to wait.

It’s not due to NHS budgets, or anything like that, that they’re saying you need to wait six months, so going private wouldn’t make any difference.

It’s to do with the way MS is diagnosed - they have to prove it was more than a one-off occurrence (otherwise it doesn’t meet the “multiple” part of multiple sclerosis), and usually the best or only way of doing this is to wait to see if it happens again, or scan again anyway after six months - whichever is sooner. If there was evidence of renewed activity at six months, you might well be diagnosed with MS (I was diagnosed that way). However, if there is not, you might be told there’s still a chance it was a one-off, and to go off and live your life, and report back if anything happens.

I’m sorry if this sounds unhelpful, but unless initial evidence is absolutely overwhelming (happens in a few cases, but not the majority), MS is usually diagnosed by quite a long drawn-out process of evidence gathering, as there’s no single test for it, and they need to be absolutely sure. For reasons nobody quite understands, a few people have a single MS-like attack, but never go on to have any more trouble, so it’s important those people aren’t diagnosed and treated for MS, and that it only identifies those who really have it. That’s why most of the time to diagnose can be spent waiting and checking whether anything else happens.

Private neurologists work under exactly the same rules as NHS ones (and it’s often even the same person working in both sectors), so if the NHS say they don’t have enough info to diagnose you yet, and want to scan again in six months, BUPA (or whoever) would say the same.

All you can do is wait 'til the six months rolls round, but if anything new happens before that, report it immediately, as it may be possible to get an earlier diagnosis, if they are positive something has happened. Not all lesions cause symptoms, so it’s possible to have new disease activity without actually noticing anything, and that type of activity can only be revealed by a scan. That’s why they recommend scanning after six months anyway, even if the patient hasn’t noticed anything new. I had new lesions after six months, even though I didn’t feel any different, and couldn’t tell anything had happened.

If it helps, MS does NOT mean you will die! You can expect life to change, but most people do not become seriously disabled, and many carry on working for years. But so far, there’s still a chance you might not have it, so fingers crossed.

Tina

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Tina’s right about the timescales. It’s a waiting game, I’m afraid, all this, and that is a matter of how these conditions work and express themselves over time. And yes, it does wreck a person’s head, no question, but there’s no help for it. It is a very tough situation to be in, I know. I wish there were an easier way, but really there isn’t. The time will pass and life goes on - hang on in there.

Good luck.

Alison