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How many MRI scans?

Hi All,

I was just wondering if there is anyone out there who had to have more that one MRI to diagnose? How many did it take and how long after first symtoms?

I have had symptoms for 2 years, MRI of brain and cervical spine a year ago, and full spine 6 months ago. All scans clear. I am thinking of paying for a private scan and if clear will give up on the idea that it is MS. Doctors and neuro say no evidence of MS so it is not MS, am I right to want more proof?

Thanks

Hi Elsie! I really understand your frustration! You have the symptoms that fit MS - so if it’s not that then what the hell is causing them!

I’ve had 2 scans that show lesions throughout the brain but not meeting the dignotic criteria. I asked if they were caused by age or migraines and it was a no. I asked if it was vascular he said he didn’t think so. I asked him if they are definitely not MS - he said well they could be!

Frustrating!!!

After several years of seeing a whole variety of consultants ruling various things out I’m still none the wiser - other than a confirmation it’s neurological!

Anyway - I guess I’ve got to the point where I accept that all I can do is keep taking the excellent meds (for me anyway!) and wait and see what develops - if I relapse again they’ll scan again - if I don’t then I’m simply glad I’m not getting worse.

Are you getting help for your symptoms etc in the meantime? xxjenxx

Hi Kizzydane, thanks for your reply.

Your situation does sound fustrating and drawn out, but at least they are admitting something is wrong with you even if you are just waiting…

I am half of the mind, like you, that if they can’t find anything then it can’t be that bad, but that doesn’t always help sometimes I think I would rather have something to ‘deal with’, the not knowing is sometimes unbearable, together with friends and family thinking there is nothing wrong with you because if there was, they would have found it by now. I don’t tell anyone any details now, just my husband and he has the edited highlights.

I am not on any medication at the moment other than for constipation. I haven’t been offered any but not sure if I would want to take any at the moment, I am still functioning ‘normally’ - it’s just harder sometimes. I have dry rice in a pillow case under my desk in work, and at home, to dig my feet into when the tingling is bad!

If I get to have this second scan and it is clear, I hope to have some peace of mind - lets hope we can all find it!

x

Hi Elsie,

I had several MRIs, but that was because they checked for disk disease in the first round and for demyelation only in the second. The thing I’ve learned from that is that they run different scans depending on what they’re looking to exclude.

However, in your case they seemed to have looked for MS right away. Still, it is important to bear in mind that we (or rather, our doctors) really don’t know too much about the brain and how it changes from one minute to the next. I really can’t tell you if it’s worth paying for one, though.

My GP kept saying in the beginning that some viruses attack the brain in a way that looks like MS and then go away by themselves (presumably without evidence of demyelation). Have you any idea about alternative explanations other than MS?

I really hope you get some answers soon!

Best,

mj

Hi Elsie,

I think most people need more than one, don’t they? I myself had four or five (lost exact count), and that was even when they did all show abnormalities. At the time of my earliest ones, nobody had even suspected MS - they just thought I had a slipped disc. So the scans weren’t really optimized to look for MS-like damage. Nevertheless, they did spot something odd - so they had to be done again, with different settings, to try to get to the bottom of what it was.

I’m afraid it is impossible to prove categorically that you don’t have MS. The best answer you’ll get is the one you’ve already had, which is that they haven’t been able to find any evidence of it. Although, in the early stages, it’s possible for MS-related damage to be too subtle to show up on MRI, in practice, the longer you’ve had symptoms, the less likely this would be - in other words, it doesn’t stay invisible indefinitely! So the longer it goes on, and the more scans you’ve had, and they’re ALL coming out clear, the less likely that you have MS.

That certainly doesn’t mean you’re imagining things, or making them up, but it does suggest the answer may lie elsewhere.

Be very cautious about paying £100s for a private scan. Private does not automatically mean better or more powerful. Unless you know for sure the scanner they’d be using is more powerful than the local NHS machine, best to assume it isn’t. As far as I know, the scans I had on BUPA were only 1.5 Tesla (the measure of strength for MRI scanners), which is exactly the same they use in most NHS hospitals. So they wouldn’t have “seen” anything the NHS couldn’t.

Tina

x

Thanks your your replies,

The scanner at the private hospital is a 3 Tesla and will cost £658 for brain, cervical spine and full spine. After this, I will not spend any more money on investigating.

I have had blood tests and other scans so as far as the gp is concerned there is nothing more they can do and she says ‘they may never find out what is wrong with me’. I find this comment hard to accept, not a ‘lets wait and see’ but ‘off you go and get on with it’! This is why I want to go private but my gp would not sign the form. I have an appointment with my usual gp the week after next but am expecting a battle to get the form signed.

I do hope I am wrong and there is another explaination other than MS, stress seems a favourite…but I am not stressed!!

x

Hi Elsie, I had two MRIs of my brain about 18 months apart and this formed the basis for my diagnosis as there was an increase in the number of lesions shown. I know how frustrating it is to not have a definitive answer hun but time can be an important factor in a diagnosis. I’m not sure how/when lesions start to present themselves but I presume they’re linked strongly to damage caused during a relapse. I’m sorry to say that it may be better for you to hang on to your money for a while until you are sure that something is going on (i.e. a relapse) and then ask for a follow up MRI (or even pay for one yourself if you need to).

Mags xx

Hi Elsie

I agree with Mags. It probably is best to adopt a ‘wait and see’ attitude (and, believe me, I do know how hard that is) rather than spend cash on an MRI that may not show any further information to the one you have already had. If you have MS, at some point you will have a flare up and at that point the lesions will present themselves quite clearly. This may take months or years and, in some cases, patients never have another incidence of demyelination.

As far as the tingling is concerned, the best tactic is to keep your mind busy with other things. I find it quite surprising how quickly my mind has come to accept that the tingling is constant in my fingers and toes and it now feels odd on the rare occasions that the tingling goes away.

Tracey x