Waiting on diagnosis.

New diagnosis and before diagnosis
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Hi all.
Just a quick introductory post.

At the moment I’m in a limbo zone, between consultants, trying to figure out what is going on!

A bit of history, possibly not all related, but who knows.

Here is my background
July 2019. Emergency surgery a twisted bowel. I was right as rain the day before, so I certainly didn’t expect that the next day! Fortunately no lasting effects, and nothing needed done to the bowel apart from untwist it. 8 days in hospital, then a month recovery at home, then a month phased return to work.

March / April 2020. Start to get bother with my right shoulder, and a weak right hand / arm and a numb right thumb. Eventually I see orthopeadic consultant, who arranges X-Ray. Suspected that I had a trapped nerve in my neck / frozen shoulder causing the issues.
Time passes, and I still continue at work, despite the weak right hand. Repeat visit to Orthopaedic consultant, who arranges an MRI scan of my neck, which gets done 10th July.

Results of MRI showed herniated discs in neck at C5/C6 level, and possible root nerve compression according to the consultant. No signs of lesions in spinal cord.

Towards the end of July, I found my right leg starting to feel heavy. 22nd of July, I found my right foot was starting to drag along the ground (which made for a difficult shift at work). Phoned in sick the next day, then phoned GP who got me admitted into hospital (23rd July), with suspect TIA / stroke symptoms. Various tests carried out during my 5 day stay including Brain CT scan and brain MRI scan - such is getting admitted to hospital over weekend, not a lot happens scan wise. I certainly can’t fault the care I was given though. Also issued with a pair of crutches to get around (I’m only 42!) and given lessons in getting up and down stairs by the physios.

Eventually discharged on the 28th of July, with a working diagnosis of “Functional Weakness”, and with a discharge letter sent to my orthopaedic consultant, and an outpatient referal made to neurology department.

5th August, an appointment with the Orthopaedic Consultant, who then requests an MRI scan of my lumbar spine. (Why didn’t they do that when I was in hospital?).

Mid august I see GP to explain worsening symptoms (both legs somewhat weak now), who takes a blood test to check for Vit B12 / Folate levels. Results come back as being on low folate levels, so folic acid tablets prescribed.

23rd August, I get my lumbar MRI scan, the results of which come back clear apart from age related “wear and tear” according to the orthopaedic consultant who I saw on the 9th of September.

Telephone consultation arranged with neurosurgeon at the Western General Hospital, Edinburgh on the 2nd of October.

2nd of October, I had my telephone consultation with the neurosurgeon, who rather abruptly says there is nothing they are willing to do, apart from writing a letter to my GP to refer me onto neurology department.

So here I am, still in the limbo zone between consultants, still waiting on a diagnosis, and still on sick leave from work. Meanwhile I’m very concerned that I’ll end up getting Ill Health Retirement from my job.

Part of the issue may be that I’m being passed between NHS Fife, and NHS Lothian and the Borders due to me being a “complex case”.

Fingers crossed I see neurology sooner rather than later, however I understand that things may be delayed due to covid19 restrictions.

Thanks for reading!

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Hi greengiant

wow, as if Covid hasn’t put enough delays on treatment!

you have the added muddle of being with 2 health authorities.

Are you managing?

Do you have a lot of pain?

I had drop foot when first diagnosed and saw a podiatrist at the hospital where my MS consultant is based.

He praised my footwear (don’t do sexy heels) and had me stand on some kind of plasticene to get a mould of my feet.

then a pair of insoles were made, I received them a few days later and was on cloud nine - they were fab.

Keep a diary, a kind of timeline of your symptoms, when started, if changed, when stopped.

this will keep your brain busy and stop you fretting

It will also be helpful when you eventually see a neuro.

make regular appointments with your GP and keep him/her up to date on your symptoms.

Use your imagination to compile a thesaurus of bad language for those days when it is absolutely needed, it’s not big but it is fun and it helps!

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Hi catwomanCarol85.

I’d say I’m just muddling through at the moment.

I’m still off sick from work, and likely to be for the forseeable future,unless occupational health agrees that I could do something in the office (I work as a postman). I do drop down to half pay in December, so I fear I’ll end up getting offered Ill Health Retirement then.

I do have my union rep on board, so hopefully between him, occupational health and management, some sort of amended duties could be arranged for me, so I’d be able to do something at work, rather than being off sick (I work as a postman). Biggest hurdle I could see is the fact that I’m on crutches, which could be a Health and Safety Risk.

Apart from my stiff / painful neck, I wouldn’t say I’m in pain at all. To try and describe what it’s like when I’m walking, I’d say its like I’m wading through water :-/

Definitely a good idea to keep a diary of symptoms though, especially since it’s likely that it’ll be a while before I see neurology.

It might be a good idea to try and see my GP to discuss the symptoms, perhaps they’ll be able to hurry things along? Certainly I’ll need to book a blood test soon to check on my folate levels, as I need another prescription for the folic acid medication.

I’d have to admit that my biggest issue is feelinn frustrated about not being able to do all the things I used to do, like ride my bike, go kayaking, walking etc. Just last June I did my first 200km cycling event. Now it takes me to walk around the block. :-/

Fortunately I’m seeing a private counsellor for my mental health issues, so it’s certainly helpful to discuss my feelings with regards to my physical health as well.

It certainly isn’t helping with the covid restrictions causing delays, and making it difficult to meet up with friends and family (especially when you live alone).

But onwards and upwards, I’ll get there in the end, I just need to be patient!

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Hi, yeh…a lot been going on but you have had good attention up to the neurosurgeon.

So now it`ll be down to the neurologist to see what he thinks.

My MS started with a heavy left leg and left foot drop.

I was seen by neuros in Wakefield, Dewsbury, Huddersfield and Halifax.

It was the super special neuro in Liverpool who finally diagnosed me, this year, after 22 years!

Good luck.

Boudsx

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Thanks Boudsx.
Hopefully it won’t take 22 years for a diagnosis for me.

It is difficult not to spend a lot of time worrying about what the actual problem is, and the outcome of a diagnosis, and how that will affect my life and finances.

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Very slightly numb right cheek today (on my face!). Feels like dental anaesthetic wearing off… How odd.

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Quick update. Missed call from my local GP Practice today. On phoning back to enquire, GP has received letter from Neurosurgery, so I’m getting a telephone consultation with the GP on Wednesday. Hopefully they’ll be able to advise what’s going to happen next. Ideally, a referral to neurology, and not a case of “Neurosurgery has discharged you, so there is nothing we can do” :-/

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Fingers and toes crossed for you.

Boudsx

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Thanks Boudsx.

I’m trying to remain upbeat, but it is somewhat worrying.

My union rep is going to chase up occupational health at work, to see if they could arrange amended duties for me since I still need crutches to get around. Unfortunately, due to Covid lockdown, there seems to be a bit of a backlog. Meanwhile 82 days and counting off work. I only had 42 days off last July - August due to my bowel surgery! Although I do wonder if this is all related? Especially since I did have an overnight stay late January this year with bowel issues, the result of that was I was put onto a special “low residue” diet.

Hopefully I’ll know more tomorrow once I speak to my GP. I’ll be sure to explain to my GP exactly what symptoms I am having, on my worse days. I do hope they can chase things up.

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(Not sure what happend to my reply?)

A bit of an update. Phone call from GP today, to explain that I’ve been discharged by neurosurgery, who is not willing to treat the discs in my neck, despite the symptoms in my hand / arm.

GP is also going to refer me to neurology (although I thought I had been referred back when I was in hospital towards the end of July). Goodness knows when I’ll get to actually see the neurologist (sometime in the year 2021 perhaps?) I am very worried in that if this continues for much longer I’ll lose my job through sickness procedures, especially since I haven’t got a diagnosis yet.

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Me again. I didnt have a diagnosis when I went on the sick for 8 months! I was having tests for MS.

My GP wrote debility on sick notes. I kept work informed. They were very good. I worked for the LA.

I evetually retied on ill health grounds.

Boudsx

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I suspect that’s what I may end up with, ill health retirement. But I do have my union rep involved, so hopefully that’ll help.

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Hi just reading above thread and history sounds familiar to mine and I had bowel op well before ms diagnosis .I also had 3 MRI scan in relatively should space of time on back and neck and herniated disc showed up but no lesion…Some months later after attending pain clinic i was given a full brain scan which showed up old and active lesions.

Then ms confirmed and now on ocrevus,im now also on long term sick and just gone through ill health pension(although im 60 soon so financially of no benefit)

Have you had brain scan?

All the best

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Hi Kerste, yes I had a brain MRI scan, when I was in hospital in July. No sign of any lesions in either that, neck or lumbar spine.

With regards to work, I spoke to my manager today, to explain the situation. The plan is to get a referral to work’s occupational health, to see if I could do some amended duties for the next while in work, until I get a diagnosis and treatment. At least it would take me off the “sick list”, and would give me some sort of routine, and help take my mind off things a little. I guess it’ll depend on what occupational health says though, with regards to me needing to use crutches.

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Good luck with occ health. Hopefully they can cine come up with sone pragmatic suggestion vis a vis reasonable adjustment or even short term redeployment

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Anyway, I gave the hospital appointments line a phone this morning. Looks like I’ve been on the waiting list for neurology for 11 weeks now, so it looks like I was referred during my hospital stay back in July. Hopefully not too much longer to wait. Certainly not worth going to see a private neurologist, as according to the appointments line, waiting time (before covid anyway) was around 15-18 weeks.

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Quick update.
I had a review video call consultation with physiotherapy today. They are suggesting that it may be Functional Neurological Disorder which I have, as that was apparantly mentioned in my discharge notes from when I was in hospital at the end of July.

Of course, the physio is unable to make an official diagnosis, so I’ll need to wait and see what the neurologist says. Anyway, the physio & neurology team are having a meeting to discuss cases, so hopefully I’ll know more where I am in the waiting list.

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Thanks for the update…fingers crossed for more good news

Boudsx

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Good luck greengiant - might be worth seeing if your GP can ask for your appointment to be expeditied as you are hving more problems - also worth saying to appointments that you will take a short notice cancellation and travel (if you can) to any hospital they cover.

I like a number of you have the herniated discs in neck and also disc problems in spine and have always written my symptoms off to that until Ortho said 100% not that!

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Which hospital trust are you being seen by? Only asking as there are some that seem to diagnose FND far more readily than others.

I had an incorrect FND diagnosis put on me 10 years ago, and that neuro is still heading the neurology unit there, and is one of the leading proponents of FND. It was overturned almost straightaway by one of his neuro-psychologist team! This then meant my GP was happy for me to get a second opinion elsewhere. I chose Newcastle - they confirmed a classic case of cervical dystonia, and definitely not FND. As they are one of the top places for dystonia research I trusted them over that other neuro. They actually raised an eyebrow when they discovered who had given me the FND diagnosis (it was quite revealing that this neuro has form).

So why am I on an MS forum? It is now looking as if my cervical dystonia is possibly secondary to MS, rather than idiopathic. Just going through the long-drawn out process now, with a separate team distinct from the dystonia clinic. Came on to see the length of time people are waiting to get tests, get neurological appointments.

Physio is good for most neurological conditions as well as FND, so take advantage of it if it is offered.

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