Hi all
I posted earlier this month about my symptoms which at the time GP suggested might be stress-related. However, having gone back, he rapidly agreed that my ‘non-specific’ symptoms could be indicative of a neurological disease and has since referred me to the local hospital’s Consultant Neurologist. Interestingly he put that he suspects MS on my referral letter.
My frustration is that whatever is causing these symptoms (some of which have been long-term/others which come and go) have been exacerbated by a recent infection I’ve had (according to GP this is often the case) and I am still not back at work, having had several weeks off. This is my second period of time off work in the last few months and in reality, over the last 6 months I’ve been off more than I’ve been there.
I am very weak, fatigued and ache, and can barely walk to the end of the road and back (which is in addition to my other ‘neuro’ symptoms). Thankfully work (NHS) are being supportive but I am becoming ever frustrated by the fact that whatever is going on either a) may be permanent or b) may affect my ability to continue to work (I work clinically in the NHS on 12 hr shifts (day and night) with a 2-hr commute each day).
Work are referring me to their own occupational health dept which I am feeling nervous about but am trying to see as a positive as the Trust I work for have a specialist neuro centre which may mean things happen quicker - surely there must be some benefit to working for the NHS!
Anyway, if this is MS, is maintaining a work/life balance possible or will I have to make some serious decisions about my career?
Thanks for reading
Jane
Hi Jane
Don’t get too hung up with MS, there really are hundreds of other things out there with the same symptoms. My diagnosis has gone from a ‘possible ms’, to a ‘peripheral neuropathy’, to a ‘we haven’t a clue’. No idea what my neuro’s next move will be!
I was signed off work for a period in September, and then again most of November and December. I kept going though, as I’m on a zero hour contract, which means replacement if you’re unreliable! I’m a part-time lecturer, so I could just about get away with it, with transport help from friends & a huge effort to hide the mistakes I kept making from my boss (I never normally make mistakes!). I was about to quit work, as I couldn’t see how I could cope with the fatigue, brain fog, and mobility problems anymore. Then, a couple of days before Christmas, I woke up one morning and I felt different. Couldn’t put my finger on it, but I knew whatever was wrong was healing.
Since then, it’s been a long, slow haul back to full health. It’s a different version of being healthy to what I had before, but its good enough for me!
So, don’t lose heart. Things can get better just as suddenly as they went wrong. Is there anyway you can move to part-time hours? I know some areas of the NHS are very supportive of changing shift duration/frequency.
Best of luck with things
Paula
Thank you Paula. You are right, at the moment it’s all up in the air and of course, this may well be the case for some time yet.
I’d already reduced hours to a minimum but for me, it’s the clinical work that’s the issue and the affect long shifts plus random nights and days are having on me. However occupational health may be able to suggest an alternative in the short term as if I make a mistake at work, it could have devastating consequences.
I’m sorry to hear you are living in limbo but it sounds as though you have found a good solution right now that works for you.
Jane
Hi hun.
I know how you feel…but all my stuff started quite a while ago and it affected my much loved job. I worked in a Tourist Information Centre and enjoyed it all.
But as my legs got more and more stupid and I fell over fresh air, I plodded on till I became a liability…especially when i tripped into the glass porch at work and smashed my face!
I needed a rest and took a week off work…then saw my GP to get a month`s sick note…things progressed quickly and I never returned to work. 8 months later I was medically retired.
I presented as typical PPMS but tests showed no proof. However, I was wrongly diagnosed with it for several years.
I now wear a diagnosis label of HSP…hereditary spastic paraplegia…however there is no proof of that either!
But the neuros have ruled everything else out.
Be careful about reducing your hours, cos if you retire early, it might affect your payout.
Of course, your end result/diagnosis may not be as debilitating as some forms of MS…even if it is MS, you may still be able to manage work.
Good luck hun.
pollyxx
Thank you Polly. I am sorry that your diagnosis prevented you from doing a much-loved job.
I’m trying to hold on in there and be positive but I’ve heard today that I am being invited into work for a meeting about my absence - they’ve assured me its routine but the anxiety hearing this hasn’t helped things at all. Its so frustrating being in limbo and waiting for referrals. If I could, I’d pay to see someone sooner/privately but I know that the initial consultation is one thing but I suspect private MRIs etc will be just out of my league.
Jane x