Just looking for some advice please. So started in Feb this year with pins and needles in left foot and lower leg, this gradually improved, also had major balance issues ended up covered in bruises. Fast forward to end May, over 5 days pins and needles spread to both legs, then got saddle anaesthesia with awful heavy feeling in back passage (like I’d had an accident) and no feeling in pelvic floor area, then a week or so later had awful tight feeling from upper abdomen down to pelvis as if id been strapped into a tight corset. All the other symptoms remained + occasionally it would feel like someone was pouring hot water over my left leg and electric shock feeling down spine when bending neck forward. Then 3/4 weeks later developed visual problems, mainly in right eye. Had to stop work at that point, not sure how I carried on so long tbh.
Had a lumbar puncture and brain scan and cervical spine MRI. So lumbar puncture showed high white blood cells, protein and was positive for OC bands. Serum was clear. Brain scan showed 2 lesions but neurologist said it was not typical of ms but still could be. Lesion found on cervical spine. Was given 5 days of IV steroids which took off the tight feeling and the pins and needles. Improved vision for a few weeks but now blurry, especially when walking or after a shower or hot drink. Neurologist then mentioned it could be neuromyelitis optica, bloods sent for antibodies. He basically said it’s definitely autoimmune but it’s working out exactly what it is, likely to be MS but could be NMO.
So, had contrast brain MRI test and evoke potential test 2 weeks ago. Still can’t work, (I’m a midwife) as I can’t stand for very long, although walking is ok, (balance issues aside).
Hubbie & I went to France for the day last week, really really long day, was too weak to even to push myself up to get out of the car at the end and since then just feel utterly, utterly exhausted where my arms ache like I’ve done 1000 push ups. I didn’t have fatigue at the beginning.
I need to get back to work and I just don’t know what I’m doing wrong that i just can’t get my energy levels back up. I’m on Pregabalin which helps the ‘tight’ feeling in my legs but i have so many questions!!
Is this normal?? Is there anything i can do? What about work? Does it sound like ms?
I’m just waiting to hear from neurologist and it’s driving me nuts, I completely understand that they need to be sure though.
Thank you for taking the time to read this.