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I need some advice from my fellow MS's. Lesion not gone.

Hello everyone,

I need some advice if anyone can help I would be so grateful. I had an MRI in Feb this year and the results showed a lesion in my neck. As I had Optic Neuritus 2 years ago and L’hermitts a year ago MS was confirmed.

I had a second MRI last September and got the results yesterday and the Neuro said that he was concerned my lesion hadnt gone inbetween the two MRI’s this year. Apparantly a 6 month period is long enough for it to go so he thinks it may be something else. A tumor. Has this happened with anyone else?

Getting used to MS was one thing and now this. The problem is that its a different Neuro and the guy who diagnosed me has moved away so Ive got this new neuro and Im not sure about him. Now Im in limbo until another concentrated MRI on my neck next week, then hes talking sensory tests and a lumbar puncture.

Im so down about this and wonder if anyone has heard of this switching from one diagnosis to another and also if sometimes lesions do not disappear in a 3/6 month time frame?

Any info would be really great.

Judy

Hi there Judy.

Never heard of lesions disappearing before.

Do you drive with your diagnosis of Optic Neuritis?

Hi,

I am not sure whether or not this will be any help, but I did not think that lesions usually or automatically “cleared up” after six months - or any particular length of time.

The only reason I think this is when I was going through diagnosis, and lesions were seen on MRI, my neuro admitted we couldn’t tell how long they’d been there, or indeed that they hadn’t “always” been there!

That would be a strange admission if they always or usually disappear after six months, as he could have said: “They are probably not more than six months old, otherwise they would have gone by now.”

Also, when I was scanned again after six months, to try to move the diagnosis on from “probable”, he said that I had a few more lesions - which were sufficient to confirm the diagnosis.

Now I suppose it all depends what you understand by “more”. I took it to mean: “The ones you had last time - and then some”. I didn’t think he meant: “The previous ones have all gone, but now you have new ones”, as surely, the word for that would be: “different”, not: “more”?

The only method I know that casts any light on the age of a lesion is MRI with contrast. But even that shows only the difference between historic and currently active ones (the active ones show up more brightly, I believe). But it cannot distinguish different ages of the historic ones.

The only other thing that was said to me was that my number of brain lesions (six) at first scan was “not too bad”, as it was not uncommon to see patients with literally dozens at my age (mid-forties). Although that is not saying directly that they don’t all go away, why else would you expect to find more in an older patient? If they all disappear after a few months anyway, why would the patient’s age make any difference to how many you see? I assumed it was simply because the older patient has (usually) been collecting them for longer!

Maybe I’ve been making a lot of wrong assumptions for quite some time, but whilst I believed it was possible for lesions to disappear, I never thought they all did.

So I don’t know. Is your current neuro actually an MS specialist - or don’t you know?

Of course, if he is not totally convinced of the evidence, he is right to leave no stone unturned, including remaining open to the possibility it could be something quite different.

So I’m not necessarily saying he’s wrong. But this is the first I’ve heard of it that a lesion that doesn’t go after six months is suspicious. This is why I wonder if you have an MS guy, or a general neurologist.

Tina

x

Thank you for your reply PUDDLE.

i had a swollen optic nerve in 2012 and went blind in my left eye. My sight has returned about about 90% so yes I do drive.The lesion found in March this year, which yesterday he said was the same size, is in my neck. That’s the one he said should have disappeared by now and because it hasn’t it may be a tumour.

Worried doesn’t cover it. I thought optic neuritis followed by lhermitts then the discovery of a lesion in my neck would make it a slam dunk MS diagnosis. My old neuro said it was MS but now this new chap is casting doubt on it.

judy

Thank you Anita. I liked your reasoning on the word choice of this chap. I’ve just looked him up and he is a Professor in Neuroloy with MS as his sub specialist. He seems to know his stuff and must do if he’s a Prof. But that doesn’t mean one should accept everything he says as gospel. I was bought up to question everything!

He’s just taken over the reigns at the hospital of my old neuro and I wonder if he’s wanting to be a big shot by changing my direction but I agree that it’s better to be safe than sorry regarding the question of whether it’s a lesion or tumour. I only have the one lesion, ON and lhermitts.

Maybe it was his choice of words. So it could just be that. I must admit I felt a bit of a failure that it hadn’t even shrunk a bit. With the contrast in the picture it stood out like a radioactive grain of rice!

Judy

Judy,

Like Tina, I’ve never heard of lesions disappearing before, but that doesn’t mean they don’t, it just means I’ve never heard of it. I have dozens of lesions, most of which have been there for quite a few years.

I’m afraid you’ll have to wait until you see the neuro for answers. You say you’re having another MRI next week, so at least things are moving along.

By the way, a large number of lesions does not necessarily mean more symptoms, I’m still fairly active most of the time.

Hope it all goes well,

Ben

LoL - it’s PUDDLE who hadn’t heard of them disappearing before.

I have, but I don’t think it’s universal or guaranteed - they might or they might not. I’ve always thought of it a bit like conventional external scars - they might eventually fade to the point of being invisible, or you might be stuck with them for life. What I hadn’t heard before was the claim that if they’re not gone in six months it might be something more sinister. I don’t think mine were gone in six months - I’d just acquired a few more. I was never told how many. I knew that if they didn’t tell me, it was because I wouldn’t like the numbers, so I never asked!

But I also agree that sheer numbers of lesions don’t necessarily correlate well with practical disability, so just because the actual number might have sounded depressing, or even alarming, it doesn’t follow that I should expect to feel much worse.

A majority of lesions are “silent” (no associated symptoms). Just shows how brilliant the brain is at reallocating the work!

Tina

x

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I grovel in mortification, it was indeed Puddle.

Ben

Thanks Anitra. I’ve googled the lesion disappearing or not, until I’m blue in the face and am still none the wiser from what I found but getting the info from you and the others is the business. You can’t beat actual info from actual ‘guests’ of MS even though everyone’s experience can be quite different.

I think I’ll do it one step at a time, MRI next week (if he arranges it like he says), then the sensory testing and as a last resort LP. Would rather not go the LP route if possible. On that if anyone has had one I would like to hear the feedback. Good or not.

Thanks for the input as feeling a bit more relaxed about the whole thing. Many thanks.

judy

If you feel as though you have been sand-bagged, it’s small wonder. That is the kind of bomb-shell that a person can do without. It is often the case that doctors, in their matter-of-fact way, consider and exclude all sorts of hair-raising options when settling on a dx. Quite honestly, I prefer them to keep these things to themselves - as they often do! - so that the more alarming possibilities are quietly considered and excluded without my losing any sleep. But you clearly have a plain-speaker - lucky you!

Hang on in there. These kind of worries loom very large, but once the evidence is in and (I hope) confirms that it is ‘only’ MS, they will melt away as fast as they came.

Alison

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I like the words and attitude Alison. Made me smile. Yep sand bagged just about covers it and now am in limbo again. When he told me his thoughts I didn’t know what to say so just said ‘Merry Christmas’. I’m staying positive thinking that the MRI, next week ( he said ) will show its just a lesion. Actually if he can arrange an MRI that quick he may go up in my estimation.

Just a question Alison. At the appointment he took out a long tooth pick type thing, and dragged it over different parts of my body. When it went under my navel my muscles didn’t flex and he said this was a sign of MS. Body to brain reaction or non reaction in my case. Have you had that test?

also have you had a lumber puncture?

Judy

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There are lots of different standard tests carried out in a full neurological examination - and, in my experience, each neuro does seem to do their own particular favourites or their own favourite way of doing them. (I’ve had a lot of neuros!)

Many of those tests are designed to measure reactions by causing sensations on different parts of the body and measuring the speed/strength/intensity of the patient’s reaction - these include things like the “hammer on the knee/elbow” that you have seen in hundreds of comedy sketches and placing vibrating tuning forks on your limbs or on your skull. I have had neuros using a “filament” (a fine, bendy thing like a bristle of a brush) to assess sensation and some will gently brush your skin with their fingertips.

As I have had them explained to me, these “touching” tests are not just a simple yes she can feel this/no she can’t but whether your reaction to the stimulus is abnormal in some way. For example I know that an overly “brisk” reaction to the hammer on the knee is supposed to be a classic indicator for MS - but I would be blowed if I could tell you what “overly brisk” actually means in practice!

My current neuro is VERY thorough in her physical examinations and they can take some considerable time. In the past I have seen others who have a much more basic routine. Even when I have a very quick once-over from the on-duty junior doctor who checks that I am OK for my regular Tysabri infusion the scope of the test will vary from one to the other by an amazing amount.

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A lot of people on this forum have had lumbar punctures and, as always, their reactions to procedure both before and after are all different.

However, one thing that I think that a lot of us agree on is that the apprehension of having an LP is actually much worse than the reality. It certainly was in my case - I had worked myself up into a right state before mine only to find that the reality was a bit of a non-event Not much discomfort/pain during and no after effects following.

Other people have said that they have had a bad headache afterwards but there are things that you can do to reduce the risk of this such as:-

  • Making sure that you are well hydrated before the LP helps.

  • The medical staff on the ward doing the LP will have you lie still on the bed for a little while afterwards.

  • Drinking lots of full sugar Coke afterwards.

I also remember the absolute best advice I got on ths forum was from someone who said that having nice treat waiting for you when you got home - like a very naughty cream cake - was good too

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Thanks Boblatina, snd thank you for all of the info. I’ve only had two neuros and they have both done different testing but dragging the big tooth pick across my stomach was the most unusual. I hope the LP is a last resort. Not through fear but unless absolutely necessary I’m not keen on the intrusiveness of it. Okay maybe a bit of fear!

Actually I was doubting my new neuro thinking he might be trying to be a big shot with his new diagnosis but he’s pulled the rabbit out of the hat and fixed an MRI for tomorrow. So he’s gone up in my estimation. I only saw him 2 days ago but then you know human nature, I immediately thought it must be urgent, so does that mean he REALLY REALLY believes it is a tumour and not a lesion after all? Am I pathetic?

Judy

I like your attitude too!

Only on the soles of my feet and I didn’t like it much. I’ve had pinprick and other tests to see what I could and couldn’t feel or testing whether I knew where bits of me were in space without looking etc.

You have reminded me of one thing: I have heard that neurological trouble round the trunk tends to be a sign of CNS rather than peripheral nervous system trouble. A numb hand can be (and probably is) an innocent trapped nerve/carpal tunnel, whatever - a numb tummy is less likely to have such an explanation.

I have, yes, to confirm my dx. I had been very nervous, but it was absolutely fine and I was back at work the next day. (I had a desk job, though - a more physical job, and I would have wanted a day or two or rest before returning to work).

Alison

Thanks Alison. Good info.

I’ve just heard I’m booked in for another MRI tomorrow which is good going as I only saw the neuro 2 days ago. He can pull strings that’s for sure. Maybe he’s OK after all but I still hope all his tumour knowledge is way off and he doesn’t know what he’s talking about.

Judy

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They can disappear but not always. Sometimes they can get smaller. I still have the same ones I had three years ago. They have not changed at all.

As Alison mentioned earlier, they sometimes voice suspicions which would be better left unsaid, without really thinking about it.

When I was still being investigated, I had a single abnormal blood result, which my neuro said could be due to a certain condition (which I won’t name here, just in case anyone else has recently been diagnosed with it, and is scared sh*tless). He helpfully even wrote down the name for me, so that I could go home and Google.

And what I found was that it’s usually fatal within months, without treatment. And I’d already been ill for ages without treatment, so might be on borrowed time already!

Then I used the exact same reasoning to deduce it couldn’t possibly be that. I’d been feeling ill for years, NOT months, and I hadn’t even been admitted to hospital, let alone dropped dead! I’d not had a day off work.

So if I really did have this pernicious killer, I was clearly some kind of medical miracle, for still being alive and walking around for so long, and not even ending up in hospital.

It couldn’t be that, really, could it?

They had to repeat the abnormal blood test - and guess what? It was fine next time. It wasn’t something that spontaneously fixes itself, so the initial result must have been wrong. I later learnt that particular test is extremely sensitive to any contamination, and yields a high proportion of false positives.

So he had me going home and reading that, statistically, I should be dead - all on the strength of what must have been contamination at the lab. :frowning:

Might have been better to shut up about that one, I think.

The only silver lining was it actually made MS look good by comparison. I suppose that’s one way to soften the blow of an MS diagnosis - let the patient imagine they’ve got something worse for a while.

I wish I could tell you you have nothing, or even that it’s just “normal” MS. Sadly, I can’t give any assurances, but false alarms are not unprecedented.

Tina

x

Humbug. For me that sounds positive and along the lines of what I had read up on over the last year since being diagnosed. It was a surprise to hear from my neuro that he was expecting a change in them.

Thank you for the info.

Judy

Tina, what a hideous time that must have been for you and yep totally thoughtless of the neuro to give his thoughts. Unless they are 99.9% sure of what they are saying they should keep it to themselves and suggest tests etc not write it down for you to google at home. Shocking.

When my neuro said the alternative to a lesion could be a tumour I went cold right through me. It was such a diverse change to the MS discussion I was expecting. Suddenly he was talking surgery, radiotherapy and chemo. I just wanted to leave, go home, put on my comfies and enjoy a big glass of wine. In fact that’s just what I did and felt a lot better.

I think you are right. It’s a reverse psychology thing so suddenly having MS doesn’t seem so bad.

Judy

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