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Help Me Please!!!

I’m undergoing tests for Multiple Sclerosis. I’ve had a CT scan which was clear, a Lumber puncture which was clear and seen a Neurologist who said that my neurological reflex tests were good. I’ve been tested for optical neuritis which was also clear.

I had an MRI scan 12 months ago because of persistent headaches which states this:

No ishemic infarction, intracranial heamorrhage or space-occupying lesion. A few hyperintense foci on T2WI and FLAIR sequences in periventricular deep white matter, a non specific finding.

Impression: no ischemic infarction, intracranial haemorrhage or space occupying lesion.

Now ive just had an MRI following an episode of tingling in hands and feet and pain behind left eye for 2 weeks…the recent MRI states this:

No imaging of a mass lesion.

Single white matter rounded hyperintensities inferior right frontal lobe and posterior left frontal lobe INSUFFICIENT to suggest demyelination.

No significant abnormality elsewhere in the brain, brain stem or CERVICAL cord. No evidence of optic neuritis or orbital pathology.

I saw my Neurologist on Tuesday who carried out examinations and sent me for ANOTHER MRI of my head, cervical spine and thoracic spine. He said the hypertensities could be just age spots but I’m only 34.

This waiting and not knowing is awful. Im really anxious. Sorry for the long post.

Sam x

Hi Sam,

so far your Neurologist has shown that he’s reasonably happy with the results of the tests you’ve had done.

To get anywhere near a diagnosis he will need to be pretty certain of what he’d say… sadly that can take a long time, you have to be patient, worrying won’t change the outcome but might make your symptoms feel worse.

Rosina

Hello Sam

You’ve said you’re being tested for MS. I don’t think you are anymore. I think it’s been ruled out by all the tests you’ve had.

Your LP was negative for Oligoclonal bands (80 to 95% of people with MS are positive for O bands)

Your MRIs don’t show any lesions typical of demyelination. And that is what marks MS out, demyelinating lesions as seen on MRI.

The neurologist didn’t think there was anything amiss about your reflexes on physical examination either, and there are some reflex reactions that are typical of people with MS.

So what your neurologist is looking for is reasons for the ‘hyperintensities’. I have no idea what these could be, but it really doesn’t sound like it’s MS.

That might not help you at the present time. After all, you are being sent for another, possibly more detailed MRI, and you have had some odd symptoms, plus the brain MRI isn’t completely clear.

It seems all you can do is wait for the next MRI and the follow up appointment with the neurologist. And try not to worry. I know that’s easily said but hard to do. But try.

Come back and let us know the results.

Sue

Thank you for the replies.

Thanks Sue for your wonderful insight. I do suffer with bad headaches. Yes everything so far has been clear apart from these hypersensities on my scan. Whilst I was an inpatient at the hospital I had a slight infection on my finger, an Orthopaedic doctor came to look at my finger and told me my scan was showing signs of MS. AS you can imagine this was an awful experience, I later got told that she got it wrong and only ‘glimpsed’ at my scan and she was not qualified to tell me. My neurologist said she has just seen the word demyelination not the sentence before which says insufficient to suggest. This has now been escalated into a clinical error complaint.

I had a further MRI on my head, cervical spine and thoracic spine last night.

Apart from these hyperintensities in my frontal lobes I’ve no evidence of optical neuritis or any bands in my lumbar puncture,

i think because of what that orthopaedic doctor has done it’s thrown me. I’ve been worried sick since the middle of December.

Someone said because of my age at 34 it could be MS.

Sam x

Hi again Sam

I really think that orthopaedic doctor should have some kind of official black mark put on their record. What she’s done to you over the past few months is terrible. You’d think a doctor would learn to read entire sentences. As well as not making snap judgements on patients based on information that’s not their specialism.

You’ve had the most god awful misery of worry these last months. I really hope the final news comes very soon and is positive for you.

I’m very glad I’ve been helpful.

Sue

I know. Well it has been escalated to a clinical complaint Level 4 and is being investigated. The worry and anxiety it has caused me has made me ill.

So in your opinion Sue if it was pointing towards MS I would have had different results than what I have had?

Thanks

Sam x

You must remember, I’m not a doctor, a radiologist or any kind of expert at all.

But, in my opinion, you’d probably not have had the words ‘insufficient to suggest demyelination’. Nor would the neurologist have suggested the hyperintensities might be nothing but age spots (no I don’t understand how you could have age spots at 34 either). It is worth noting that when a neurologist went through my latest MRI a few weeks ago, he did point out that there was nothing indicating dementia or Alzheimer’s - so age spots don’t mean your brain is aging prematurely. (I don’t think.)

You might have had a positive LP. And/or a physical exam that indicated different reflex reactions.

I think the neurologist (not the orthopaedic doctor!) might have mentioned MS if s/he thought it was possible or likely.

I doubt that the orthopaedic doctor’s ridiculous comments to you would have reached the complaints level they have if she had any grounds to suggest MS was possible.

I so hope all my thoughts are right, just remember, they are my thoughts, not any kind of definitive answer.

Sue

I understand Sue that it’s your thoughts but I cannot thank you enough for your replies. I have been an absolute mess my emotions have been like a yo yo.

It also says no evidence of a mass lesion and no other abnormalities in my brain including my cervical, or any optic neuritis. A clear LP is also good news I think.

The neurologist said he wants further tests but I think possibly that could be for me regarding everything I have been through.

Thanks again

Sam x