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Potential MS diagnosis

Hello all

I’ve been under neurology for about 2 years now for various issues related to a genetic condition.

However, some things unrelated to the genetic condition have come up, and the possibility of MS is being tossed around, because of a combination of issues:

  • Delta wave slowing in my temporal lobes
  • Myoclonus
  • Trigeminal neuralgia
  • Loss of sensation in my hands without large fibre neuropathy (normal EMG and NCV tests last week)
  • Autonomic dysfunction (PoTS)
  • One episode of ataxia about 18 months ago that resolved (brain MRI at the time was normal)
  • Blurred vision, double vision, visual disturbance (you get the idea) - neuro found “ocular gyro instability” the other week
  • Memory loss

Anyway. The EEG is the main one. I’ve had 2 EEGs now after I had the myoclonus last year - one in Jul 2016 and one in June 2017. They both showed the same thing, so the issue has clearly persisted but it is now “much more pronounced in the right temporal lobe”, i.e. it’s getting worse. But no epileptiform activity, so they seem not to want to diagnose epilepsy despite the seizures.

The report just said “suggestive of cortical abnormalities”. It seems like from the letter my neuro sent, and from my internet research (I know, I know! But I’m not a panicker), that “cortical abnormalities” revealed by EEG slowing, corresponds mostly to either dementia (I’m 24), cerebrovascular disease (TIAs etc…seems unlikely), a brain tumour (they’d surely have found it on my first MRI in Jan 2016 since the seizures started 6 months later), a brain injury (never hit my head), OR multiple sclerosis. Neurology thinks it’s MS as they suggested on the letter - but haven’t scheduled another MRI!!!

Does anybody who has gone throug the diagnostic odyssey have any thoughts about all this? I know you’re not doctors, but if any of this stuff sounds to you uncharacteristic of MS (or if it does, how do I go about getting diagnosed properly?), then I’d love to hear your thoughts.

hi leo

the letter from your neuro didn’t mention any follow up appointments?

if not, ring his/her secretary and ask.

maybe your GP could help too, they sometimes chase things up with neurology.

i really hope you get some help soon.

allow yourself a night off from the worrying, it’s the weekend, have a pint.

(that wasn’t meant to be flippant)

take care

carole x