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oh no, more to worry about!

Hello

I posted on here a couple of weeks ago having had an MRI which showed up some “increased activity” - have now had neuro letter via GP which says there are a number of areas in my brain and cervical part of my spinal cord consistent with demyelination. They also found some antinuclear factors in my blood test and I am still not really sure what that means.

I was asked to go back for a second MRI last Friday which included contrast dye (not my best bit!), which I thought was all linked to the above. However, the letter also says there was a “suggestion of a meningioma” and that was the reason for asking me back. Of course I have googled meningioma which has now sent me into a complete panic.

In the meantime my symptoms though very mild in relative terms (all sensory based, eg hot feels cold, touch feels painful) have not completely gone away in over 2 months - does that mean PPMS??

It all feels completely surreal as apart from the weird sensations I actually feel really good at the moment - yet the scans are throwing up abnormal things, and I go from feeling ok-ish about it all to in complete panic and not coping. I am not sure when the 2nd scan results will come through - I have another neurologist appointment on 8th april which seems like a lifetime away.

I am not sure if anyone can give me any words of wisdom.

ali x

I will write more tomorrow, but I thought you might still be up and worrying. If you were scanned for a possible tumour, the radiographer will almost certainly have already reviewed your scans and, if they had seen something that concerned them, they would have been on the phone already. The NHS may have its shortcomings, but it is pretty amazing in an emergency.

It is not unheard of for a patch of demyelination (a lesion) to look like a tumour on MRI. Given the other lesions and that they said the “suggestion” of a tumour, it is very very very likely to actually be a lesion.

Try not to worry too much.

Karen x

Hi Karen

Thank you so much for posting so quickly.

I am oscillating between the mad extremes of “surely it cant be that bad as I feel so fine” to being totally terrified…“but I need to be here to see my children grow up” - the latter all the harder as my daughter technically has a life limiting condition so it is sooo important to give our son as secure a childhood as possible.

and trying to get some work done! (am self employed)

thanks again x

Hi Ali,

I can’t offer any technical advice to your scans i’m afraid. Just wanted to let you know that i understand what your going through.

I too was suspected of having a tumor after 2 MRI’s and can completley emphasise with how scared you are feeling.

Like you i have 2 children, which i think can make things seem harder but at least you have them around to keep you busy!

Like Karen has said if it were an emergency you would know by now, so try not to worry too much-easier said than done i know!

I also have sensory symptoms that have never gone away and i have RRMS.

Good luck, let us all know how you get on, you will always have somebody here who understands.

Laura x

Hi Laura

Thanks for your comments - it really helps to know someone else has worn the same T shirt! x

A fuller answer:

Most meningioma are benign and cause few if any symptoms and all that they do is keep an eye on them so, even if it one, chances are that it won’t cause you any problems at all, apart from meaning that you’ll have to have regular MRI scans, which is a plus if it’s MS anyway.

The antinuclear factors thing is the ANA blood test. It’s not specific to any particular disease and a positive finding is not uncommon in MS. If your level is particularly high (and “some” doesn’t sound terribly high), then they may want to check for certain MS mimics, but a positive finding in itself is nothing to worry about.

As Laura already said, RRMS does not mean no symptoms during remission. What tends to happen is that a relapse brings on a number of new (and old) symptoms. These get worse, peak and then gradually get better to some degree. That process can take many months, even more than a year. At the end of it, some symptoms may have improved completely, but some may never improve. The rest are somewhere in between. So, the reason that RRMS is disabling is that a large chunk of relapses leave behind some degree of permanent symptoms: how we were before and after each relapse is a step change. That means that our bodies are starting from a worse position the next time we have a relapse, and that when we get to remission we are that bit worse than before the relapse began. Etc. In contrast, progression is a gradual process. It can be a fast or slow gradual, and contain the odd plateau, but it is when symptoms get progressively worse. As an illustration, RRMS is like a set of stairs whereas PPMS is like a slide.

If you haven’t heard anything from the neuro, why not give his/her secretary a call later this week and ask about the results, tell them you’ve been worried. Hopefully they’ll be able to reassure you that all is well.

Karen x

Hi Karen

Thanks for this - its easy to get carried away a bit (eg most meningiomas are benign, but that doesnt mean all etc!) and get out of perspective.

If it is MS how would I know which type, or is it just wait and see and worry??

thanks again x

The only way of knowing for sure is to give it some time. If things are improving, then it is almost certainly RRMS. If you’ve had something like this happen before and you got better from it, then it is RRMS.

PPMS tends to start as it continues, i.e. gradual worsening of symptoms, often to do with walking.

About 85% of people are diagnosed with RRMS.

Kx

Hi Karen

Many thanks, I will keep everything crossed. Nothing has got worse (yet) in the 2 months since it all started and most symptoms have at least improved.

Your help is amazing - what is your background? x

I used MRI in the research for my degree and PhD.

The MRI & research experience + having MS for 15 years + being retired so I have plenty of time on my hands + my Uni kindly allowing me to maintain library privileges + previously lecturing in Biological Psychology & tutoring students in all aspects of Psychology + liking to help people + (in 2010) seeing people on this forum not getting many responses from experienced MSers, ended up with me doing this: my “self-imposed, completely unofficial, voluntary, day job” :slight_smile:

Kx

you should be rewarded for what you do K but not in song, just recognition!

Thanks Tom, but as it’s completely unofficial, I think “thanks” will probably have to be enough :slight_smile: And it is :slight_smile:

Kx

Well, its very much appreciated.

One thing I don’t understand is, if I have got several possible lesions why have I got such limited symptoms? I am not being ungrateful for that, just a bit concerned that it means something else is brewing! x

Lesions don’t always cause noticeable symptoms. These are called “clinically silent” lesions and happen because most of the brain works in networks - lots of areas working together to do things. So a lesion could completely scupper a network and cause a severe symptom, partially disrupt this and cause a less obvious symptom or do apparently nothing (although the brain is probably working harder than it used to). For example, a lesion on the optic nerve could cause complete loss of vision, a slight loss of colour vision or might only show up on VEPs with the patient being completely unaware of any problem.

Kx

Ok, thanks - there is so much to get your head round!

Am going to ring later and see if any results back from 2nd MRI, though a bit in trepidation. If there is definitely demyelination and lesions is it definitely MS? sorry to ask so many questions x

Only the neuro can tell you what it is - even people who appear to meet the McDonald criteria may have something other than MS going on.

Let us know what they say?

Good luck!

Kx

Hi

Well just an update about no update - report from MRI not on the system yet so GP can’t see it, GP and neuro both away next week so guess will have to wait til neuro appointment on the 8th.

So will just drink wine, eat chocolate and pretend its all normal!!

ali xx

The radiologist will have seen your MRI and so, since no one’s called, I’m sure they are confident there isn’t anything urgently wrong. No reason not to stick with the wine and chocolate plan though :slight_smile:

Kx