sorry to hear you’re still in limboland - its the worst place to be - a diagnosis - any diagnosis at least enables you to deal with it and move on.
My journey started 3 years ago in February - I was at work when blurred vision started in my right eye and within a couple of hours I could hardly see anything through that eye. I work next door to a shopping centre so i nipped over to Vision Express where they sent me straight to hospital. Optic neuritis was diagnosed and i was referred to a neurologist. 3 years on i still have blurred vision in that eye and no peripheral vision.
In August the same year i started experiencing pins and needles in my right foot which gradually spread up my leg and would have periods of heaviness where my leg just didn’t seem to want to work. I would also have times where my right arm just didn’t seem to belong to me and wouldn’t co-operate.
In the November - i had my “big” episode - i went to get off the couch and my right leg just collapsed underneath me - i couldn’t walk. It was no better the following morning so my husband took me to the GP who referred me to the hospital. The neurologist told me clinically i had RRMS and was started on IV Steroids. However - 2 days later I had an MRI which showed no lesions so the diagnosis was withdrawn.
I was wheelchair bound for a few weeks, then moved to crutches but it took me approx a year to be able to walk unaided but i have been left with right leg drag and foot drop.
it was only through seeing a new neurologist at the end of last year who did SSEPs and re looked at my MRIs who finally gave me my diagnosis.I now have spasticity in both legs, cannot walk any distance without being exhausted, suffer bouts of fatigue that last weeks rather than days and am now finding driving a strain on my arms. I work 3 days a week - when i manage to make it in but my employer is incredibly supportive.
But apart from all that -hey - i still have a lot to be thankful for - takes a lot to dull my sparkle!
I hope you get your diagnosis soon - keep pushing the Neuro - sending you big hugs xxx