I have been having lots of odd symptoms for a while now. I have longstanding problems with my c-spine so put the ‘weirdness’ down to this. I was referred to a spinal bod for assessment and he ordered a repeat MRI of my spine - the last MRI was 9 years ago. He requested a scan of my entire spine as I have Ehlers Danlos - on which I am blaming my spine issues. The report was rather an epic (a full A4 in length!) and it seems I have problems at numerous other levels. Despite this the surgeon didn’t think that many of my issues were attributable to my spinal problems - so I’m being investigated for possible lesion(s) and having repeat (more detailed) MRI of my spine plus brain MRI and a referral to a neurologist. I would add that the spine MRI showed no lesions.
My symptoms are terrible balance problems which also affects my walking - I have been described by the spinal surgeon as having ‘spasticity and a degree of scissoring’ - whatever that means. My walking has become very slow and I have difficulty keeping up with anyone walking at a normal pace. Other problems include intermittent urinary incontinence, pins and needles (like a buzzing sensation?) in my left leg (but this could be from my spine), abnormally strong reflexes and positive Babinski. The latest problem has been double vision which has been assessed by optician and I’m waiting referral to optometrist / opthamologist. My optician suggested prisms might help but as it’s variable (and I’m hoping temporary!)… and the prisms are a tad expensive I’ve just kept a ‘normal’ prescription. I don’t get headaches, eye pain or prolonged dizziness. I do suffer from very bad fatigue - but have done for a while and I have attributed this to my EDS. I have also started to get a weird word and even phrase swapping - where I use totally random words that don’t make sense and are, at times, hilarious.
I made the fatal mistake of googling ‘lesions’ and my symptoms - and MS is appearing at the top of the list. I have two close friends with MS: one had numbness and lost the ability to walk as the first sign; the other had optic neuritis. Neither of which are similar to my problems I’m looking on this as a positive sign that it’s probably (hopefully) something else!