I haven’t posted for quite a long time - had got used to being in limbo (well, as used to it as you can be!) and just taking each day as it comes! But have a new set of symptoms and am seeking advice/others’ experiences when it comes to new symptoms and work.
I was diagnosed with transverse myelitis, and then CIS, in Feb-April 2017. I had one fairly large lesion at C2 and 10+ brain lesions. My main symptoms were numbness/strange sensations in hands and forearms, and buzzing down my spine when flexing my head forward. The feeling in my hands/fingers has never gone back to what it was, and the severity tends to fluctuate; the buzzing comes and goes - can be quite bad for a few weeks, and then almost completely subsides. The neuro has put all this down to the original spinal cord lesion, and has said these symptoms might be permanent. I had a follow up MRI last March that showed no new activity.
Around New Year I noticed that my hands suddenly got significantly worse, then over the course of about 72 hours I became numb all down the back side of my body, then the numbness seemed to drop down to below the waist and kind of wrap around my legs. My lower belly, undercarriage, backside, legs and feet are now numb (not completely numb - the sensation is just weird, feels like my legs are coming round from an epidural/spinal block, IYKWIM!) My bladder also seemed to be playing up (hesitancy, then didn’t feel like it was emptying properly). Over the weekend I got symptoms of UTI, so went to the GP on Monday - they were much more interested in my numb legs and sent me to hospital! The hospital did a full physical exam, bloods etc and requested an urgent MRI. They also managed to get hold of my neuro who advised to treat the UTI first in case it was causing the symptoms (even though it came on afterwards). So I’m just coming to the end of a course of antibiotics. Haven’t had the MRI yet, just waiting for them to contact me with a slot.
I am having some trouble walking - I’m much more tentative and slow than usual (because I can’t feel my legs/feet properly), and it’s very uncomfortable. I don’t think there’s any real loss of strength, but they feel very heavy so I can’t crouch then stand or run up stairs as I’d normally do. My legs seem to seize up/stiffen within a few minutes of sitting down.
Anyway sorry for long background - my main question is about how to approach work. I work for a very understanding employer and boss, and can work from home fairly regularly. I have a long and fairly stressful commute into London, so I’ve been waiting to see how the symptoms improve / worsen before deciding how to proceed. But it’s slowly dawning on me that my legs may just stay like this for a while! I know it really comes down to how I feel, but I’m struggling to decide whether it’s better to push myself to walk as much as possible and do the commute (because the longer I stay at home the more difficult/daunting it might seem), or just to rest to give myself time to get over the initial shock/worry (the hands were one thing, legs are a whole other matter!) I feel like I can’t just sit around indefinitely waiting to see what they do next!
Thanks for reading