After having an episode of faecal incontinence, L’Hermitte’s and weakness mainly on my left side, and 18months of trying to get doctors to believe me, I was diagnosed in 2014 with a lesion on my spinal cord at c5/c6. I had a lumbar puncture about 6 months after the worst of the symptoms which came up clear, and I had also been separately sent to eye infirmary for suspected optic neuritis which didn’t show on the evoked potentials and so was told it definitely wasn’t MS. I have an autoimmune disease called Sjogren’s syndrome, and so I was told that they thought it was caused by the SS attacking my spinal cord.
Over the years ive had some flare ups but nothing too serious. However this last month I have had some really odd stuff happen… started with a 5 day migraine which rivalled my LP headache at times, then got these weird funny turns happening: I’d get these goosebumps appearing on my scalp and then moving down my arms or into my legs - but the goosebumps would be appearing in patches. that settled down after a couple of weeks, and then shortly afterwards I started getting a sensation on the left side of my back around my bra strap which felt like I was being squeezed, happened for a minute or two several times a day. That’s still happening although sometimes the squeeze now feels like a TENS machine. Then I got a couple of days where my whole right leg and foot would go completely into spasm, a few times each day. Next I got (in the same leg) sciatica like pain around knee, shin, ankle and foot, but GP confirmed not sciatica. Then started to get burning warm sensation around anus and vagina, and across shoulders into armpits, and some numbness in my nether regions too.
Gp ended up sending me to Aand E, who gave me 60mg prednisone and an appointment with the on call neuro the next day. Neuro did lots of testing, I know that I had numbness to pin prick but not vibration, and that I couldn’t reliably touch my nose with my eyes closed, but not sure what else they picked up. She also told me to stop taking the steroids as she wanted to see what was happening first. That was a week ago, I was told I’d be called for an brain and spine MRI within 2 weeks, they’d then have a multidisciplinary meeting, and they’d call me back to follow up afterwards. She told me again that MS has been ruled out.
Pain went within a couple of hours after the prednisone, and the sensory symptoms are still here (plus I’m wiped out!). The tightness thing on my back got painful yesterday and I got the same thing on my head (weirdly!).
Do these symptoms sound MS like? I don’t understand how they can say they have ruled MS out? I did a search when I first had the lesion, and I thought that you could only rule it in, not out, in someone with a MRI spinal cord lesion?
Thansk for your help…