i think I may have accidentally deleted my first post last week about terrible communication about symptoms, though things have now moved on slightly (whether that’s good or bad)
background- numbness and tingling down left hand side of body for a week last August, MRI showed a patch of inflammation in spinal cord. Blood tests and cardio tests ruled out enlarged blood vessel/ anything to to with heart.
Over Xmas has another episode with left calf muscle twitching violently then loosing strength and eventually feeling like a dead weight leading to me limping around for a week.
lumbar puncture done in January, which came back positive for O bands in CSF, but not in bloods. Found out these results about 2 weeks ago (so nearly 2 months after I had LP)
Neuro orders another MRI to see if there is any more evidence of inflammation, awaiting that.
last Wednesday get funny pain in eye, went to optician, suspects inflamed optic nerve. Pain gets worse over weekend to unbareable so go to out of hours GP, he also suspects. App at eye clinic at hospital today, optic neurosis confirmed.
does anybody know where this leaves me on the ‘journey’? My neuro was great at first but since lumbar puncture I feel Iv just been left to get on with it, I have still never had any letters about my results, my GP read the results sent to them to me, and then I had to get neuro to phone me about them (2 months after) but still was never given any real diagnosis or plan or what to do next…it’s all a bit confusing!!!
with this optic neurosis am i best to phone his secretary tomorrow and tell her? Do I rely on GP telling him?
how do you work this NHS thing?