Thoracic Spine MRI Scan with contrast today!
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Good luck !
Well, I had the MRI scan yesterday. Apparently the radiologist declined the neurologists request for the Thoracic Spine MRI scan using Contrast. So it was just a plain MRI scan, no contrast dye injection.
Hopefully this scan will show something, so I can get some sort of a diagnosis, but my fear is it’ll show nothing, so I’ll be in limbo zone still, undiagnosed, and paid off from work due to ill health.
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The use of contrast is a bit of a mixed blessing. It will show active lesions - those that are younger than typically 4 weeks, as a brighter halo, but this gets less bright over those weeks. So if you’ve had a very recent relapse which has created new lesions then it would show them differently from older lesions. Without contrast, the lesions should / will still show, but without the halo. The contrast chemical does however tend to stay within the body / brain for the rest of your life - so radiologists prefer to not use it if they feel that they can see well enough.
Limbo is a very uncomfortable place. Unfortunately current medicine still has a very limited knowledge of how the brain and central nervous system works, and still very few tools to aid diagnosis.
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Small update. A letter from the hospital today (date marked 8th of January!!), saying that the neurologist has sent my MRI images of my Brain MRI to a neuroradiologist, who confirms that my brain scan is within normal limits for age, and shows no inflammatory changes.
And once he has received the results of my MRI scan of my thoracic spine, he will review them and be in touch.
So a little further forward. Hopefully I should get the MRI results in a few weeks, bearing in mind covid & postal delays.
Meanwhile, someone I thought of as a genuine friend has unfriended me on facebook, saying my mentioning of going for MRI scans etc was upsetting to them… Well, sorry for having on going physical health issues. I guess they must have been a fair weather friend anyway…
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Well, I’m getting invited to a chat with main boss at work, to discuss my health and employment prospects, and to discuss ill health retirement. 
I’m still waiting on a diagnosis, and I’m covered by a 3 month fit note for amended duties. So it seems a little unfair to be offering me ill health retirement yet, since I don’t actually have a diagnosis!
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As you are wanting to work it will feel like a threat that he’s invited you to a chat about ill-health retirement. For anyone actually wanting retirement on ill-health grounds it might feel more welcome, I guess. Hoping that it is just to establish how you feel about things rather than trying to push you out. You’ve got your union looking out for you, if I remember correctly. Take care.
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Hi Ziola, yes I do have my union rep involved. I suspect its coming from the level above management, trying to reduce expenditure on staff sickness, especially as it gets nearer the end of the financial year. My rep will be attending the meeting with me tomorrow.
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How did you get on with your ‘summons’ by the management?
Ok, I think Ziola.
While the “Big Boss” was somewhat over enthusiastic about the benefits of Ill Health Retirement “You’ll get a years wages to give you time to decide what you want to do while you get better” etc, myself and union rep expressed my wish to remain employed with the company, even if redeployed into another role.
So next stage is a telephone consultation with works occupational health service next week (Optima Health). However I know that any employers occupational health service is biased more towards the employer, rather than the employee.
However my union rep is going to give me support, as well as a more experienced union rep who also has neurological issues (CIDP), and faced the same issues with his employer around 4 years ago. He was able to still be employed, although in a different role.
So the plan of attack is for myself and union rep to go through my transferable skills from current & previous jobs and education, to look for skills which would be suitable for me to be redployed into an admin role in the office.
Unfortunately, runour has it that a manager in the office is going to be demoted soon, and an admin job is going to be engineered for him so he can still be working indoors on the office, rather than back on delivery. So it could be a case of the manager getting any admin role, rather than me.
But I can’t not fight for redeployment. At least that way if I’m unsucessfull, and I do end up with IHR, I know that i’ll have done all that I can to keep my job.
I am now realising though, that it’s unlikely that I’ll ever be back on delivery, no matter what the eventual diagnosis is.
So hopefully within a few weeks I should know the outcome, jobwise. I am fearing for the worst though, I’ll certainly miss my work chums and colleagues.
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Glad it was not bad news even if it is still all uncertain for some time yet. Good that you’ve got such useful support from your union.
So you are currently in two limbo lands … health wise and job wise. Ughh, not a nice place to be. A lack of diagnosis just makes it all the harder. I think survivor of 2 types of limbo land should be rated very highly, as character strengths. Resilience is a real quality, as is perseverance. I’m not sure how often it is realised by the fit and healthy, that those with health problems can be the most reliable workers because they really want to work.
Maybe the about-to-be demoted manager will decide he prefers the outdoors and wants to be out there delivering, so leaving an admin job for you, or manages to get a job elsewhere.
Keeping fingers crossed for you.
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Thanks Ziola. At least I’ve got strong backing from the union, so hopefully that will help.
Meanwhile I’m going to try and forget about it, and enjoy my weekend off.
Thanks Ziola.
I guess it’ll be, what it’s going to be. While I do want the union support to stay remaining in employment, it if comes to being months and months of fighting and union battles and stress, then I’m not sure that’ll do my health (physical and mental) any good.
Anyway, I had my appointment with the occupational health service, I’m now referred onto the Occupation Health GP, who’ll contact my consultant etc, and make the descision with regards to ill health retirement being the only option.
I’m not sure this is related, but I’m finding my hands (particularly my right hand) is getting more weak, and I’m feeling more “fingers and thumbs” with my dexterity not being as good as it used to be.
I’ve also had a couple of instances where I felt somewhat like a one sided hug on my chest. Perhaps I’m just imagining it? Or is it the sign of an “MS Hug” starting?.
Anyway, still I’m waiting on my blood test results from the neurology appointment on the 14th of December, as well as the results of my thoracic MRI scan on the 26th of January :-/
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It will be what it will be - so true.
Fingers crossed you get the decision from the occupational GP that you want. Yet more waiting though. It is no surprise that people with neurological conditions end up with anxiety and/or depression.
If you have to take ill-health early retirement does that mean you would not be able to take on any other job, should you manage to get a diagnosis at a later date and pull things round? In the civil service it appears you are not allowed to work again, so it is quite a final door. If you are allowed, then at least that door is left ajar.
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Blimey. Finger’s crossed from me too. I feel for you, and as the resident autistic this is a big deal, I recognise some of the despair-causing behaviour by the neurology profession, I’ve had my fair share of that!
Ongoing, keep a record of dates, severity and type of symptom. It’s easy to forget you have them, when they happen day in, day out - I get electrocution and my toes get hammered month in, month out but other bits have started to too and I record those but not the feet - which I should.
I now have a diary and write it up every night. It will be easy to look up dates of symptoms that way.
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Thanks Ziola.
With regards to Ill Health Retirement, my employer offers two types. IHR with immediate access to pension if you are deemed by occupational health to never be able to work ever again in any capacity for any employer, or just a lump sum (which works out to almost a years pay) if you are unable to work for your current employer, but may be able to be employed in a sedentary position with another employer.
It’s pretty rare for the IHR with pension to be given out, the majority of time it’s just the straight IHR with lump sum payment. which would mean I’d be allowed to gain employment elsewhere in the future, health permitting (that’s assuming there are still jobs out there, what with a global pandemic). Plus I’d be classed as a “good leaver” for reference purposes.
Anyway, I have an appointment with my (private) counsellor tonight, via zoom, so that is something I’m going to discuss.
Ninja Mum, that’s actually a good idea, to keep a symptom diary.
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Thanks for explaining that to me.
Hopefully you will be retained, in a desk based capacity that suits, and you won’t have to go looking for another job. I do think there will be jobs out there when Covid finally gets knocked back. The vaccine effectiveness is now giving us some hope that we can start to dominate Covid and tame it, rather than it dominating us. It feels as if there is some light at the end of the tunnel - still some way off, but edging closer. Plenty of people are still working and have all through, and many will have built up savings. Just about everyone wants to go and do things - shopping, holidaying, visiting the pub or restaurants, cinema, theatre, football - you name it. There’s going to be a huge demand for all sorts of things, and a huge spending spree, on leisure activities in particular.
Now your counsellor is in the right area of work - can work on Zoom, and I imagine plenty of Covid related work on top of the normal, for quite some time to come.
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I phoned the hospital today. Still no results from my MRI scan on the 26th of January, or the blood tests from the 14th of December!
Last nights counselling meeting was helpful. It helped me realise that if I do get IHR, then it won’t be the end of the world.
You’ve obviously got a good counsellor!
There are positives about staying in work, but also positives about retiring. If IHR does happen it could be the start of something new and better! Less money, but far more time to do what you want, and more time to let your mind relax and help your body recoup and rebuild. More time for exercise - physiotherapy or just doing what you want.
Over the last 40 years I’ve had 4 major relapses. After the second one I was made redundant. I was really angry about it at the time, but it allowed me to fully recover. I was out of work for a long time because we hit the big 1990s recession. The redundancy was actually the best thing for my health, looking back. A month or two sick leave wouldn’t have been sufficient to get really properly well again. With the third one I had to give up my business. That was a much harder struggle to get my health back. I was unemployable for a long time because of my health, but bit by bit I got much of it back, and eventually into work again.
Now, with my fourth one - I’m still in work, dropped to 4 days (2 days, then 1 day off, then 2 days) but though I’ve pulled back a bit of my health, I know that it’s not giving my body enough time to properly recover. I’m knackered by mid-day - they don’t know this as I’m working from home! The Wednesday off is just recuperation time. Sitting at a desk is worse for me than trying to do more physical stuff, even though that feels harder. I know I’d be better off pottering around in the garden and having gentle walks at the right sort of pace, than stuck at a desk. So I’m seriously thinking about retiring 3 years early. I need to look through the figures. My father recently died (aged 95 - a great age, he did well) and I will inherit a bit of money which may make it feasible. It wouldn’t have been otherwise. I actually don’t like my current job (dire management) so that makes it easier to consider leaving! If I can get my health back a bit, I may be able to do some short term contract work of the type that I really enjoyed - pottering around in the countryside botany recording or doing bird surveys.
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Thanks Ziola.
I think it would be better if I actually had a diagnosis, part of me thinks it’s unfair that I could be facing IHR, since I don’t yet have a diagnosis.
But realistically, even though I don’t have a diagnosis, my symptoms are such that I’m unable to do my role, and I can’t see myself being well enough to do my job role in the immediate / near future either.