Clear MRI so no MS, right?

New diagnosis and before diagnosis
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As background, I initially went to my GP with (presumed) worsening of symptoms from c-spine. (I was diagnosed with cervical spondylosis ten years ago - several slipped discs as a result of a combination of cervical instability (from Ehlers-Danlos Syndrome) and whiplash (from skydiving). GP referred me for further investigation. To cut a long story short my neuro exams (5th July and repeated on 14th Oct) were abnormal - positive romberg (balance is atrocious!), positive babinski, hyperreflexia and spasticity of lower limbs. Repeat spine MRI showed moderate to severe damage at all levels from S1 to L1 (which was new but unsurprisng given I have EDS), but did confirm no deterioration of c-spine: I still have a very thin rim of csf around the cord. Neuro felt that symptoms were not coming from spine and that something else was going on - ?MS which I was surprised about at the time as I thought that, at 51, I was a tad old for MS! He requested a repeat MRI of c-spine plus brain which I had done mid November. (As an aside, I have since been diagnosed with double vision and referred to opthalmologist (appointment 21st Jan) but probably not connected - muscle weakness??).

I found out that I was being referred on to a neuro at my haematology appointment (Christmas eve)…and that haematologist would liaise with surgeon for any operations! Anyway, I called the surgeon’s secretary yesterday to find out what was going on - presuming if I was being referred that they must have found something on the scan. Sec was really lovely and filled me in on everything - she was actually typing the letter to my GP as I called. Apparently (with the exception of c-spine issues which we know about) scans were fine - no lesions on either brain or spine (TG) However, my case was discussed at spinal surgeons’ weekly conflab and a decision was made to refer me onto a neurologist (but not discharge me from neurosurgeon as he is still considering a multilevel fusion).

I was surprised at this as I assumed that normal brain scan = no MS and so no need to see a neuro? I am presuming I can now discount MS? Has anyone else been in this situation - i.e. a normal brain scan but with doctors still considering a neurological problem?

I seem to be the opposite to many on here - wondering why I’m being referred while others are trying to get a referral without success.

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If there is ?neurological stuff going on that they do not feel that they have got to the bottom of, a review by a neurologist sounds liek a good idea. You must be fed up, playing specialism bingo like this, but so it goes! Perhaps it would be worth a chat with your GP - they tend to be the centre of a web of referrals, and should be taking a bird’s eye view of it all on your behalf, to get his/her view on how matters stand. The GP should be on top of making sure that all the specialists have all the information - for instance, the opthalmologist should know about the neurology referral, and the neurologist will need to know about the opthalmology referral.

Good luck with it all.

Alison

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Thanks for the reply Alison - I should be grateful they’re beng so thorough. I guess I’m getting frustrated as I have a screw working loose from an ankle fusion last year that’s cutting into my skin. It’s at a place where my shoe rubs against my skin so pretty painful. They won’t go ahead and remove it until they have decided what is wrong neuro wise. I’ve had two other not so good diagnoses in the last year so I am hoping the odds couldn’t be so mean as to give me yet another illness!

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Just in case it may be relevant to anyone else, one interesting discovery I made is that individuals with EDS (Ehlers Danlos) are ten times more likely to develop MS than the general population.