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!
Hi katalina. Yes it could be something else - the weird and wonderful symptoms of ms can be down to a number of other things. It’s good that it’s being investigated further though so you may get some answers from your brain MRI. Having said that, and without wanting to worry you any more than you are no doubt already doing, these are the symptoms that led to my diagnosis of relapsing remitting ms. BUT I’ve seen a number on here with similar symptoms who have gone on to be diagnosed with something else which has had really good treatment options and outcomes. So, try not to focus on ms and wait to see what happens with the MRI. How long will you have to wait to have that?
Thank you for your lovely reply Sunflower. My MRI is tomorrow - so getting nervous. Everything seems to have happened relatively quickly. I was referred by my GP to the back clinic in early summer as the assumption was that it was my c-spine issues. (The back clinic is a sort of triaging system they have in our area run by physios). I was seen in July and given a very thorough assessment by a lovely physio. She was concerned because my reflexes were abnormal and my balance all over the place. She referred me for a repeat spine MRI (late July) to see if the CS had worsened. From that I was referred to the spinal surgeon - with a note that I was away for a few weeks so to wait til we returned in late September for any appointment. Totally separately, on Oct 9th I was due to have surgery to remove metalwork from my left ankle (I had a talonavicular fusion last summer - EDS related). I was all gowned up, marked up and about to be wheeled down to theatre when they read my pre op assessment bit about c-spine issues. My surgeon called up my July MRI scan and had the spinal surgeon in the next theatre take a look at it - and the op was cancelled with an urgent appointment booked for the following Monday (14th) to see the spinal surgeon. Very frustrating as I also have a thrombophilia so I’d had to come off warfarin and go onto twice daily fragmin shots - then back on fragmin shots post op 'til they got my INR stable again.
At the Monday appointment the spinal surgeon repeated many of the tests with the same outcome as those done by the physio. He said the c-spine problems didn’t explain many of my symptoms as there were no signal changes in the cord at C4/5 C5/6 (where I have disc issues) and while the space is reduced there is still a very thin rim of CSF around the cord. He felt something else was going on. He also said that in his opinon he felt I could have had the op if they had been careful - which was really annoying! I asked if, given his findings on my MRI, we could reschedule the ankle surgery and he said no - he would rather wait until they have found out what is causing my other issues. He wrote to my GP (summarising the exam findings etc and cc’ing me in) and arranged for the MRI with onward referral to a neurologist.
Hopefully, tomorrow’s MRI will give more answers but no idea how long it will be for the follow up / referral to the neuro.
Blimey, you’ve had a lot to deal with. Hope the MRI went ok yesterday and that you get your results quickly. I was lucky to hear back from mine within a few days but I know others have had to wait weeks. Take care of yourself in the meantime x
I was awoken last night by very strong ‘twitching’ spasms in my leg - but twitching seems a bit of an understatement! It lasted for maybe thirty seconds to a minute and woke my partner. My whole leg seemed to be in spasm. I’ve never experienced this before. Is this likely to be neurological and should I mention at my appointment? (Still convinced I have a valid alternative (non MS) explanation for all my other issues - with the exception of the Babinski.)