Hi Ziola.
It’s NHS Fife I’m primarily under, although the neurosurgeon was under NHS Edinburgh and Lothians.
A bit of progress. My physio had the meeting with the neurology team today, and due to my symptoms the neurologist want’s to see me asap. So hopefully just a matter of weeks, rather than months, for an appointment (Bearing in mind I was first referred to neurology back in the end of July when I was in hospital with the symptoms).
Ah yes, I missed that in your first post! Glad it isn’t the hospital trust that I know is overkeen on handing out FND diagnoses.
Good that your appointment is being shifted from the ‘slow’ pile to the ‘faster’ pile. Hopefully it will be before Christmas, and better still in November. The waiting bit is a hard place to be, and the increasing pressure on waiting lists due to rising Covid 19 makes it more uncertain and even harder mentally.
Orthopaedic Surgery Clinic letter came in the post today, appointment 3rd December at 2pm. Bizarre though, as I’d been discharged from Orthopeadics, passed onto neurosurgery, who passed me onto neurology. I suspect it’s due to the discs in my neck, but seeing as neurosurgery decided they are doing nothing, not sure what the Orthopaedic clinic will do… At least it’s another appointment though.
Another quick update with regards to work.
Unfortunately, I cannot get a referral to occupational health, until I’ve seen a specialist, and received a diagnosis.
However work, (with agreement from union rep) is willing to let me return on amended duties until such a time as I see specialist for diagnosis / treatment. So I think that will probably be the best plan of action. Being off work sick certainly isn’t good for my mental health, due to not seeing work colleagues. And being at work (albeit on amended duties) would aso distract me from worrying about what’s wrong with me etc. Plus it would also “stop the clock” with regards to my usage of sick leave. So if I did require more time off following surgery etc, I’d still have some sick leave to take on full pay.
So that’s my plan for Monday, contact GP to get a fit note organised.
Wishing everyone a pleasant weekend.
Good to hear you feel fit enough to be heading back to work (just as long as they have effective covid 19 measures in place), even if you won’t be doing your usual work. And also that the NHS hasn’t forgotten your existence!
Nothing is straightforward though is it! At work my manager keeps muttering about occupational health with me (not that I’ve had any time off work yet, though, like you should be doing a physically very active job), and I keep saying I don’t have a diagnosis so don’t know how this condition might develop. I’ve been saying that for over 18 months, as the NHS progresses even slower than snail’s pace.
And one of the most annoying things is that without a diagnosis you also don’t have any protection under Equalities law. Unscrupulous employers can make use of that limbo period to get rid of people, with little comeback. Your employer is probably a reasonable one - helps when there is a union also watching your back.
As one of my roles I am responsible for HR and I have sent staff for Occupational Health Assessment before any diagnosis so we can support them as much as possible with adaptations if needed.
Hope your return to work goes well.
Anyway, I spoke to GP, fit note getting done for 3 months amended duties. Hopefully I’ll have seen a neurologist & have a diagnosis by the time it runs out!
So I’ll be starting back to work tomorrow hopefully, although on amended duties. But it’ll be good for my mental health, being able to see my workmates etc rather than being at home on my own!
First day back at work done and dusted! I’m tired now though, but good to be back and see my workmates.
I got my appointment through for my neurologist appointment. Monday 14th of December.
So just over 5 weeks. Hopefully I’ll get some answers then, although I’m expecting to get a diagnosis of Functional Neurological Disorder. But at least not too much longer to wait now.
I saw the orthopaedic consultant on the 3rd of December. As I suspected, it was a very quick appointment, the consultant just said there is nothing they can do. So I’ll see what the Neurologist says on the 14th of December.
I am a bit miffed at a couple of facebook friends though, one of whom said that the neurologist I am seeing is “nasty”, and the other one pretty much said that all neurologists are incompetent… Not particularly helpful I’d have to say!
I was convinced I had posted a reply…
Anyway, a quick update following on from yesterdays appointment with the neurologist.
A very thorough full neurological examination (even if I was a little cold stripped down to my y-fronts!). I found the Neurologist very helpful. All my reflexes were tested, as well as balance and my gait. Medical background also discussed. While he wasn’t willing to confirm a diagnosis until I’ve had more tests that’s probably a good thing as I had half expected to just get diagnosed with Functional Neurological Disorder, and then discharged with no further treatment.
Anyway, bloods were taken yesterday (7 vials worth!). I wasn’t entirely sure what was getting tested, but since I’m currently on folic acid as prescribed by my gp following a blood test a few months ago, I think that’ll be one of the tests. I should get the results by the end of the week…
I’m also getting a referral for a lumbar puncture, as well as a repeat MRI of my spine, with contrast medium. Although I’d have thought they’d want to do a repeat MRI of my brain with contrast medium as well.
So despite me friends fears that the neurologist wasn’t going to be helpful, I actually feel a bit happier that I’m getting more tests to rule things out. I do suspect it’s going to be a good few months yet till I can get a firm diagnosis, one way or the other, so it is still a bit concerning that I may get ill health retirement from work before too long.
However at the moment I’m enjoying being back at work, certainly better than being off sick at home. I’m office based, booking in undelivered parcels, which at least is productive even although I’m not out on postal deliveries. It’s good to have daily banter with my work chums as well. I have updated my union rep with my current situation, so hopefully I can remain on indoor duties until I can get a diagnosis.
Good to hear that things are moving forward for you, and that they didn’t palm you off with FND without conducting a proper evaluation.
Even better to hear that you are back at work with your chums, and enjoying the positive vibe of being productive. I think there will be plenty of work for you for some time to come, given the covid situation and big demand for online shopping.
Thanks Ziola. I am a bit concerned about what’s going to happen with regards to work, in the new year. Hopefully it won’t be too long until I get my next lot of tests, although with the new strain of Covid causing a national lockdown (again!) things may be delayed…
Anyway, seeing as I had clearance from my physio, I thought I’d set my bike up on my turbo trainer and do some indoor cycling using Zwift. I managed half an our or so. It was certainly good to be able to do some cycling again.
good for you, i could do with some exercise myself.
afraid i’m a lazy arse though!
New hours at work from next week, 9:30am to 3:30pm. Certainly better than 12pm to 6pm. Slightly different duties as well, although still desk based rather than out on delivery, and Monday to Friday, with sat and sun off.
Now my area is in Full Lockdown. My fear is this delays my MRI scan / lumbar puncture even further, meaning I get ill health retirement at work before a diagnosis and treatment 
So sorry to hear this. We are living in the wrong country, with dithering politicians still unable to grasp the nature of exponential growth, and prevaricate until the NHS is so overloaded that non-covid conditions get sidelined and kicked down the road. I think there will be many who will be in the same position that you are in. Without a diagnosis people also have no protection under equalities legislation.
Anyway, some good news. A phone call from the hospital today, I’m getting a face to face physio appointment, at the main rehab physio clinic for NHS Fife at Cameron Hospital, next Friday at 3:30pm. I have had a couple of appointments with them via online video conference call, but I think I’ll get better help once I’ve been assessed in person.
Bit of a trek though, as Cameron Hospital is a half hour drive each way from home. Thankfully I’m OK for driving, assuming we don’t got tons of snow between now and then.
While the physio appointment probably won’;t help with regards to diagnosis, at least if it gets me a thorough physio exam, along with an exercise plan, that should hopefully help with my symptoms.
I have mentioned me swapping my day off next week with the main boss at work, I just need to confirm it with my immediate line manager on Monday.
Got home to a couple of letters from the NHS today. First was a copy of my report from the neurologist, which has been sent to my GP and Physio.
This has been sent to my GP, as well as a copy to the physio, and the consultant neuroradiologist at Edinburgh Royal Infirmary, who is going to review all my imaging.
So no answers yet, but at least things are progressing slowly. Next stage is the physio on Friday, and the MRI scan of my thoracic spine on the 26th of January