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!
I really feel for you, not least because you remind me very much of me 20 years ago. Your description of those strange symptoms brings it all right back!
Looking back, I was too inclined to press on regardless and to assume that, if a relapse wasn’t physically stopping me from getting to work, then I wasn’t sick enough to be off. If it took longer to get up the stairs safely, never mind. If I couldn’t type on account of hands not working or couldn’t read on account of eyes not working, never mind: find another way to get the job done. (I had a desk job and an easy by-car commute, by the way.) And had been brought up to believe that there’s nothing like work to take your mind off your ailments. I’m not saying there isn’t a grain of truth in that. But with the benefit of hindsight, I did myself no favours whatsoever - in fact I was completely stupid and did not take MS nearly seriously enough. Did I do myself actual harm? Probably not. But I certainly didn’t do myself any good.
In other words, you need to take your health seriously and take whatever is the matter seriously. Things amiss with your CNS are serious, whatever name they carry. Your body needs rest and recuperation when it’s under attack (even from it’s own side!) and trying to heal.
Now I know that a relapse is a bloody relapse and no joke, and that it takes the body a heck of a lot of effort to deal with that and to set the repair mechanisms in place to recover as best you can. And that it is the job of the person with MS (or TM, or whatever) to give him/herself the best chance with rest and good nourishment and plenty of sleep and all that good stuff. That might mean disappointing some people, missing some deadlines, losing a hard-won reputation as a competent and reliable employee, maybe - all sorts of painful stuff, but there it is. I’m not saying throw in the towel and take to your bed for the duration. But I am saying that it is important to balance your duties and your health with some thoughtful care, and that pressing on is not always the right answer. If you have a supportive boss, that is a great start.
If you can, ease off and let yourself be ill if you are ill (hint - you are ill). Try not to make the mistakes I made - or not all of them, anyway.
Thank you so much for the reply. I think my husband would love you as this is basically what he’s been saying to me! It’s exactly as you say - I feel that if I physically can get to work (albeit more slowly and with some discomfort) then I should (even though my boss is not putting any pressure on at all!) Also the fact that the neurologist seems to think this has probably been caused by the UTI (and is therefore not a true relapse) makes me feel like a bit of a fraud - even though the symptoms are very real! I had 2 or 3 UTIs between Sept and Nov and none caused worsening of existing symptoms as far as I noticed. The leg thing is all new and started before the current UTI (though I guess there’s a possibility that I had some low level UTI for a while without realising - would be a bit strange because I know exactly what they feel like and they usually get a grip on me very quickly! Or maybe the 2 or 3 earlier ones triggered an immune response over a few weeks, and I’m feeling the effects now). I don’t have an MS nurse to talk to about all this as I don’t have an MS diagnosis.
I’m due to see the neuro for my annual review on 4th Feb - don’t know whether he’s going to class this as a relapse or all to do with the original TM. He said if it’s the UTI then my legs should start to feel better now I’ve got rid of it. Of course the MRI will show if there’s any obvious new inflammation.
The new thing in the last 24 hours is that I feel like I’m standing in a cold puddle!
To start your bending of the head causing buzzing is called L’Hermittes; see mult-sclerosis.org
As far as work is concerned; you should tell your manager that puts you under the equality act 2010. As you have a good employer; they would probably introduce ‘reasonable adjustments’ to make your life easier.
