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Waiting on diagnosis.

Bit of an update. Phone call from hospital & neurologist. My thoracic spine MRI has came back clear, as were my most recent blood tests.

The neurologist wants me to have another MRI scan done of my neck, due to the ongoing symptoms which so far haven’t been explained by results of MRI scans. I should get an appointment for this in a month or two.

The neurologist want’s to see me at his clinic again, but this has a waiting list of many months. He is not keen to do a lumbar puncture yet, due to covid 19 and due to wanting to see what the neck MRI shows. My previous neck mri scan showed herniated discs at c5/c6 level, which the neurosurgeon didn’t want to do anything with. My fear is the MRI scan will show that again, and I get bumped from neurology, back to neurosurgery, who’ll rapidly ping me back to neurology again…

Work wise, things are escalating. The more senior union rep is now on my case (who has personal experience of neurological symptoms). I suspect things will come to a conclusion within the next couple of weeks, which will more than likely be ill health retirement.

Thanks for the update. So the wait goes on - such a tough place to be. At least your neurologist is still trying hard to figure out what is going on.

Are you now getting physiotherapy? I remember it was mooted at one point. Surely that was offered when they decided to not do surgery on your herniated discs. Though talking to my neighbour today about the NHS, he said they were useless when he had one - he didn’t get physiotherapy despite asking tor it. They did absolutely nothing, didn’t even give advice!

I hope the OH team don’t put you out to grass just yet, as you clearly want to keep working. With Royal Mail piloting parcel deliveries on Sundays for retailers surely they will be needing more staff, and maybe some will be desk-based work? Keeping my fingers crossed that they will do, and will find a suitable permanent new job for you, or need to keep you on in your present role.

Thanks Ziola. I have seen the physiotherapist. While it is helping with my strength, it doesn’t seem to be helping with my “function” of walking, still seems like the signals to my legs are getting muddled.

As you say, at least the neurologist is still doing tests to figure out what is going on, rather than just giving me a tick box diagnosis of something like Functional Neurological Disorder, and sending me on my way.

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Hi,

I’m also in this limbo land and it really does suck.

My whole journey started nearly 5 years ago properly. Since then I have been passed backwards and forwards from neurology and other departments and it is just exhausting. I’m constantly asked if I am an anxious person and I’m really not. I work full time and I only have episodes where it just quite literally knocks me off my feet. The most recent one was this weekend when I woke up with a swollen leg (no injury) and ended up in A&E as they thought I had a pulmonary embolism. Fast forward a couple of days and I have been discharged from hospital and now awaiting a referral to respiratory on top! I only went in with what I thought was a knee injury. It is so very frustrating as the A&E doctor said to me I feel like your symptoms are most likely due to RRMS but I went down that road several years ago and was made to feel so crazy and neurotic that I just didn’t have the heart to pursue it any further. She told me that if she was me she would be going back to her GP as this isn’t normal.

The whole diagnosis journey is completely soul destroying and it only makes me feel angry and stressed. I really hope you get some answers soon. I’m deciding now whether I should ask to be referred back to Neuro. My experience has been awful with them. They tried to get me admitted as an inpatient to a neuro rehab clinic for FND when I was walking and talking and working full time and just looked at me.

I have everything crossed for you!

The advice from the A&E doctor to go back to your GP sounds very sensible. You clearly don’t have much faith in the neurology unit you were seen at a few years ago. If your GP decides to refer you to neurology you should have a choice of places where you can be seen (assuming you don’t live in a very remote area!), so you should be able to avoid that particular neurologist / hospital.

Anyway, I managed a slow, wobbly walk without my crutch today, so that’s a start. With regards to work, I’m OK for the moment, possibly things may change in a few months. However if my mobility improves, that should help with my work situation.

Not much of an update really, except to say that I’ve now got an appointment through for my next MRI scan, on Wed 5th of May. This will be a repeat MRI scan of my Cervical spine, possibly to check if my herniated discs at c/5 c/6 level have gotten worse, which were seen on a previous MRI scan, but the neurosurgeon decided to do nothing with.

I can’t help but feel that the can is just getting kicked down the road, and I’m just getting passed from pillar to post. It’ll be 9 months next week since the onset of my neurological issues… My fear is the MRI scan will be inconclusive with regards to a diagnosis.

I had my 5th MRI scan yesterday (a repeat of my cervical spine). They had to run a scan cycle again, due to me swallowing at the wrong time in the scanner.

Consultant should get the results in 10 to 14 days.

Work wise, things are looking a bit more positive which is a relief. Union reps are still involved though.

Hi @greengiant1 -how did u get on in the end? I have v similar symptoms to you, from the sore right shoulder/ arm/ hand thing to the tingling face. I am right at the start of things, and have what could be classed as the Ms hug, tightness around lower rib cage on and off. Wondered how you’ve been since your last update?

Hi @Starbabe , I’m still waiting on latest MRI results.

My mobility is somewhat better, although my walking still doesn’t feel “natural”. Which is a bit of a problem if you need to be able to walk for your employer…

Bit of an update, my mobility is improving a bit more now. While my walking still doesn’t feel “normal” , it certainly feels more normal than it did a few months ago.

I’m still waiting on MRI results. Currently I’m on annual leave, my hope is that my mobility will continue to improve, which will make a big difference to my employment prospects.

A letter from the hospital today.
It didn’t mention any results, but I now have an appointment to see the neurologist (Dr Zeidler, NHS Fife) on 5th of July. I only hope this appointment is one stage closer to getting some sort of diagnosis, and won;t be a case of the neurologist saying I’m getting referred to someone else for more tests with a many month long waiting list to get a referral for an appointment onto the waiting list to see who ever it is I need to see…

And so the wait goes on, for you. But at least a date that isn’t many months wait. Your recent news that you mobility has edged a bit closer to normal must be a bit of a relief for you. Hoping that it continues along the route of progress.

Thanks Ziola, as you say it’s not too long a wait until I see the neurologist. Hopefully by the my mobility will have increased more. However I’m still a bit concerned about the outcome of my job issue though.

So I’ve been on annual leave from work the past 2 weeks.

I’ve very pleased in that my symptoms have improved that I’ve been able to start cycling again, and get further each time, 25 miles today.

Its still very odd that I have difficulty walking though, despite cycling feeling “natural” now. This makes me wonder if it is more like FND that I have, rather than MS.

So a letter from the neurologist today, with the results of my MRI scan from the 5th of May.

Apparently the “C5/C6 chronic posterior disc protrusion, with ongoing central canal and bilateral foraminal stenosis with a possible persistant foraminal root compression but with no compressive myleopathy” would not explain my symptoms.

So goodness knows what the neurologist is going to say when I see him on the 5th of July. No doubt it’ll be “We don’t know whats wrong, so we’ll refer you to someone else with a 12 month waiting list for a referal to go on the waiting list waiting list”

Cycling seems to be much easier than walking for some people with MS. A friend of mine had been a seriously keen cyclist. He developed MS and when I knew him he had a lot of symptoms, was certainly in the disabled category, and it was progressive by then. Walking was very difficult for him. But on his bike you’d not notice that he had any issues! The saddle and arms takes most of the body’s weight, so leg weakness is not quite such an issue. The actual movement of the legs on pedals is quite guided, and much less complex than walking. One leg is resting on the upstroke, whilst the other does the work on the downstroke, so they get these little bits of rest all the time. Balancing a bike is easier than balance when walking - once the bike is moving. And it is so efficient. You don’t get to freewheel with walking! And lots of speed and miles covered for not huge amounts of effort!

So enjoy. It will help build up strength in the leg muscles. And walking pushing a bike is much like walking with a rollator, it can help with balance and give support to weak legs - and you look like a sporty type rather than in need of a walking aid! Little things like that can help self-esteem.

If the neuro has no answers then I guess you’ll have to settle into limbo land for a while. Learn to accept that you might not get answers for a while but keep on working on getting gradual improvement, or at least on finding ways of living that accommodate how you are, and let you live life as close to how you want to be, with adjustments as necessary, such as work that you can manage.

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Thank you Ziola.

Yes, I am somewheat relieved that I’m able to get cycling again, albiet not as far or as fast as I used to be able to do. In 2019, I did a 200km cycling event, only for me to end up in hospital the following month with a twisted bowel and an emergency laparotomy. Perhaps that was the start of all my issues?

Anyway, while I can’t cycle far and fast, I’ve changed my minds set to just enjoying the scenery etc while on the bikes . I have 3, depending on my mood, I can go off roading on my mountain bike, or general leisurly cycling on my touring bike. My racing road bike, I can use, although less interested in it for the moment.

Just last week I was able to combine a cycle ride on my touring bike, with some nature sound recording, hence the microphones in the bike handlebar bag. I did get some nice bird calls from the woodland near Hopetoun Estate, near Edinburgh.

Bit of an update, thanks to union reps at work, I’ve been offered a different position at work, more suited to my symptoms. Only for a few months for the moment, but hopefully a change to get redployed to there permenently once I get a diagnosis / referal to occupational health.

Basically I’ll be working in the delivery office, booking returned parcels into the system. It’s an afternoon / evening shift, so while the hours aren’t ideal, it’s better than being dismissed through capability. But I’ll get every Sunday Monday off. And its a “productive” position, while for the past 6 months or so I’ve just been doing various “light duties”, which if Head Office had seen me doing, would probably question the efficiency of.

But hopefully things are starting to get resolved!

Excellent news. Mondays off are good too - much quieter than the weekend for just about everything. Unless you happen to be someone who loves being in a crowd queueing for things!