lo all
Had phone consultation last week
Went better than I thought it would tbh. Neuro asked lots questions and i had taken ‘themes’ from my diary to be able to give him answers so Trigeminal Neuralgia, bladder, twitches, altered sensations, lightheaded/accompanying nausea- though didn’t really keep a track of how long sensory issues had been lasting which was bit of a miss for him I think.
I was able to advise I had looked at all self assessment /management stuff (eg magnesium supplements, posture, BG tests etc) so had approached GP , and also when approached GP last year for other sensory issues
He didn’t seem to be of view it was likely MS. I was clear that whilst some of the symptoms weren’t as ‘blatant’ maybe eg falls, ON, that maybe I am just aware and able to report earlier and he has agreed MRI of brain and thoracic /spine and appt in 2 months time for follow up. So, we continue on the journey
Of bigger note however is that he is specialist in epilepsy. I want to GP around 4 years ago with what i thought were simple partial seizures. I thought to mention prior neuro attendance was important. Was given CT then, referred to neuro who concluded atypical migraine though i do recall querying that at time. It happens on average 2x yearly at most, and in clusters of few days with no loss of consciousness or impact - in fact have been cooking, shopping carrying on driving when its happened. He is fairly convinced it is focal epilepsy and agrees with my initial assessment. Also gets the grey area re taking meds if happens so infrequently , and has been unmedicated in real terms for 4 years. Probably only happened about 6 x in 4 years if that. I noted in research Jacksonian seizures common in MS , but of course that says nothing really
I wasnt expecting THAT on the appt, and have queried a dx of this on the phone, but he notes EEG will show nothing and my history is sufficient. So meds prescribed if i want to take them .
I am now convinced more than ever that (clearly) something is going on neurologically and have told him that I wont entertain meds until post MRI and appt . OH is delighted if it is, though have tried to tell him that this doesnt explain symptoms still. So may just be going for a hatrick of long term conditions. I curse my genes… 