Ever had one of those days!

[Adlon57]

I have had schwannamatosis since aged 14, [I am aged 64] had three operations for it, various misdiagnosis's later, including NF2 Neurofibromastosis, in all that time, never actually consulted about it, mainly finding about it via myself online, books etc. Then 2016 a neurologist, off her own bat, never seen me before, discussed my symptoms, both agreed more likely to be schwannamatosis NF3, a year later she told me schwannamatosis. Asking around various places and people, Guy's Hospital aware of my situation, as they got in contact with my GP. One pandemic later eventually able to get in contact with with same neurologist, and this morning first time ever able to discuss my relevant medical history on the condition, all sorts of things lined up, scans, tests, MRI's, etc! AND as well on HU able to discuss about electric shock symptoms from effects of lamrotragine, I have JME epilepsy, I had stuck to my guns about the 'weird' effects for years, okay medical authorities had finally accepted my 'effects' but never heard of ANYBODY having similar electric shock type effects, I thought they had put me down as a bit of a 'nutter'? Then finally someone else EXACT same effects as myself! Great Day!!

[EpilepsyAction1 Partner Epilepsy Action]

Hi Adlon57

I'm pleased you have finally found someone you can share your experience with.

Regards

Diane

Helpline Team

[Adlon57 in reply to EpilepsyAction1]

Yes a REALLY good day!👍👍