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Out of blue found out i have MS

Hiya,

I went for a scan with ENT as had ringing in ears, on that scan doctor picked up some hypertensive white matter lesions… So advised i get that looked into… My GP then sent me for a MRI on brain and neck… Rang me up and told me i have MS… And that someone from neurology hospital will be intouch. I have now got a letter advising appointment will be arranged to discuss treatment…!

I have so many questions but my doctor thinks best i speak to neurology… How can i be told i have MS of the back of a scan… Surely it may be something else? All happening so quick…

Anyone else been diagnosed this quick?

Hi,

Oh, what a shock - that does seem an amazingly quick diagnosis compared to the majority.

A call from a GP does NOT count as an official diagnosis of MS, because (1) They’re not allowed to diagnose, and (2) NICE guidelines say an MS diagnosis should always be given face-to-face (although I appreciate the latter is sometimes shamefully ignored).

If there is talk of treatment, then I assume they must be sure - as it seems premature if not - but your route to diagnosis is still unusual and leaves questions, so I think that is something to clear up when you see the neurologist, i.e. “How can you be sure this is not an isolated incident?” and: “Why don’t I need the usual two confirmed episodes, or two years’ continuous progression?”

I don’t want to give you false hope, but it is possible this is all your GP jumping the gun, and that when you get there, you will be told it’s not quite as clearcut as all that, and that they want to do more tests.

Have you ever had any blood tests in relation to this, for example?

Even if you have confirmed brain lesions, MS is a diagnosis of exclusion, as there are other conditions that can occasionally cause lesions, so your blood should have been tested for a whole host of other suspects before confirming it’s MS - let alone starting you on treatment.

If you’ve never even had a blood test, it seems most unlikely they would proceed straight to the treatment stage without wanting more checks.

Brain lesions are definitely something, so I’m not trying to fob you off with: “Don’t worry, it’s probably nothing”. But your diagnosis does seem irregular, to say the least, so I think you’re quite justified in wondering just how certain they can be. At the appointment, you need to speak openly about your concerns, and clear all this up.

On the positive side, if it is MS, it’s good to spot it early, and to be offered treatment early. Looking back, I now think I had MS at least 6-10 years before diagnosis, and when I really think hard, it could be more like 20 years - my neurologist agrees! That was a factor in my declining treatment, as the whole notion of “catching it early” had flown out the window with me. But in your case, you’ve still got the “catch it early” opportunity - if it really is MS, that is.

Tina

x

Try not to worry, it may not be as bad as you think.

It sounds unusual that your GP gave an MS diagnosis after seeing the scan results, but I suppose it’s possible…

Have all your questions ready for when you see the neuro, usually lots more tests have to be done before a diagnosis is given & that can take a very long time. If everyone is already certain what is wrong, then it’s good that the neuro wants to talk about treatment, possibly DMD’s.

If you were to decide on DMD’s I personally believe it’s better to start treatment sooner rather than later as the drugs are designed to slow down the progression of MS by reducing the amount & severity of any future relapses you may have.

You may have an overzealous GP, but if he’s correct, that can only be a good thing & you’re being dealt with quickly.

Good luck

Rosina x

Apparently i have 5 lesions in brain and one in neck/spine area and radiologist has reported it as ms… Apart from early tinnitus … Im 29… and one occasion i had a very brief numbness in arm and i do have floaters in right eye… However these could be totally unrelated… And im in generally good health…

Ive had no other tests just the second mri…

I am a bit annoyed ive been told this over the phone and just left to it… Though i have now Got an appointment booked in with neurology… Part of me hopes it all a big mistake…

its a bit overwhelming… The suddenness of it and The unknown i suppose

thanks for your replies… Its more than ive had of anyone in nhs so far :slight_smile:

Of course you’re overwhelmed, that’s completely understandable. Try hard to keep an open mind, although some symptoms might point to MS, they could also point to many other things, only your neuro can tell you this. Try to look at it that by getting a quick diagnosis (for whatever the problem is) you can benefit from the treatment sooner.

Good luck

Rosina x

Echo Rosina. I was diagnosed out of the blue too. Had double vision, went to hospital, had MRI, got admitted and put on a drip. Diagnosed within two weeks of having symptoms. Never had symptoms before. Hugh shock.

Several months later I was actually undiagnosed to a CIS by a different neuro as when they looked again there was no evidence of separation by time.

Nevertheless I feel lucky (if thats the right word!) it was picked up so early as managed to start DMT’s.

2 years on I have had no symptoms (touches head frantically!).

A radiologist isn’t qualified to diagnose MS either! I’m getting crosser the more I read - but not with you.

The radiologist can highlight findings of interest for the neurologist, and may venture to suggest what they might mean, but the clinical diagnosis always rests with the neurologist, taking into account not just of the scan, but of ALL relevant evidence, including the results of other tests.

At the end of the day, radiologists aren’t stupid, and what they suggest may well turn out to be relevant, or even spot-on, but it’s still not their call. I think your “diagnosis” is highly irregular, and I’m not even positive you’ve had a diagnosis - at least, not one that follows all the rules. Although now you’ve highlighted (you did mention it before, but it wasn’t so clear) that you’ve had two scans, and it wasn’t on the back of just one, it becomes a little more plausible - they may have been able to establish there was continued/renewed activity by comparison of the two scans.

But I still don’t know how they could reach a confirmed diagnosis without at least blood tests to rule out rarer causes of brain lesions. It is technically permitted to diagnose on symptom and MRI evidence alone (I’m actually diagnosed that way), but in my case, it didn’t mean they didn’t do any other tests. In fact they did lots - except lumbar puncture, which I refused.

But it worked out that MRI was the only thing that yielded any useful information - everything else was negative/normal, so all it proved was I didn’t have XYZ other things - but going through the motions of disproving the other things is still important.

Tina

x

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The first scan i had was for my tinnitus, thats when some lesions were picked up coincidently And on back of that gp arranged for another fuller mri… I am starting to get angry myself at the way its been handled… Told over phone by GP then receiving a letter from neurology department, stating that senior neurologist feels that a face to face consultation is required in order to decide on the most appropriate treatment…

Surely if your diagnosed with something thats possibly life changing you would have more support… Information…

I did call my gp back a few days ago and he said himself he was vague,

not great experience im having, overthinking it all…