upper motor neuron myelopathy of the spinal cord

[mermaid-680]

hi

I was diagnosed with this feb last year as a historical diagnosis to present after many years of problems with no answers . I also have a functional overlay but for many years this stopped drs. Really digging more

The myelopathy was not visable on mri but picked up on EMG and together with my history this was the best diagnosis bearing in mind the original spinal trauma was in 1994 and I did not receive imaging at the time ie mri however spine structures show where the original trauma was at T11/12 lumbar and cervical and overall my spine has been degenerating since 2010 more so than would be expected for my age

No major issues with discs but allot of facet joint and disc degeneration and also slight narrowing of S1 left foramen nerve root exit . It does cause me pain when side transferring in my chair and trying to bend to the left side .

I am now 54

There’s no treatment for it as it’s in the spinal cord but drs have not said if they know where and I don’t know if the EMG could have pinpointed exactly

If there anyone else with a similar diagnosis ?

I am relieved to have a diagnosis but still unanswered questions that my neurology’s sr seems unwilling to answer

I am awaiting a sitting mri scan in a few weeks as I am also suffering with possible compression in my spine in sitting position can’t get comfy on sofa at all and in wheelchair it’s horrible gnawing pain that radiates out from lumber and lower upper spine , down to buttocks and legs

Like an expanding pressure that just builds up

any help appreciate

Em d

[SheilaDugan Administrator]

Hello, I do apologize for my delayed response. I had something similarly. It would be interesting if the EMG alone would detect myelopathy. Usually it is determined with an MRI or a Myelogram. I would invite you to please listen to our podcasts Myelopathy Matters on most podcasts platforms such as Spotify.

Have you had any imaging done? Are you currently wheelchair bound?

We also have a Facebook group. Myelopathy.org Support Group. It is a very caring group.

I do hope you get you imaging soon. I understand all too well the pains that come with sitting. What other symptoms might you be experiencing.

Sheila

[mermaid-680 in reply to SheilaDugan]

hi Sheila

Thanks so much for your great reply

The MRI didn’t show it but I have facet joints and disc degeneration and an old lesion at T11/T12 which is one of the areas I received trauma from an RTA in 94 didn’t get any imaging at the time so it went undiagnosed

Neurologyst feels it was that trauma that caused the condition . So a historical and current diagnosis made feb 22 after many years of knowing something was wrong but couldn’t get anyone to seriously investigate

It wasn’t visable on mri in 2021 but the EMG did show something which led to a diagnosis coupled with my symptoms and history

For some reason unknown possible I’ll fitting wheelchair symptoms got allot worse including lower limb spasms

Plus bladder issues worsened too

I didn’t have a myelogram but dr says it’s to do with the spinal cord and is classified as an SCI although am guessing here it’s where the outer part of spinal cord sends messages to the motor nerves ?

Quite unusual I guess

alas because it’s not showing on the actual mri I cannot be referred to a specialist spinal unit where I would get better care all round they need proof on MRI

Wheelchair bound 3 years post trauma since 1997

There is increased muscle tone and spasms and weakness in both lower limbs and it affects my bladder also

Hope to get the new sitting scan soon as I will struggle to lay flat in the scanner

Gp also wants to rule out slow onset cauda equina

As the scan in 21 didn’t cover the conus and L1/L2 !!!

Neuro dr refusing to re do scan

Plus I’ve had several bad falls over the last year out of my wheelchair

So having to go private in any case re sitting scan as you can’t get it on nhs anyway

I’ll look up those other videos

Am not on Facebook

Many thanks

Emma

[SheilaDugan Administrator in reply to mermaid-680]

Emma, is it possible to see a private consultant. I realize going to a private physician may not be within your means. However, may it be possible especially since you are losing bladder control. I do fear there may be something going on.Have you heard anything else?

[mermaid-680]

hi Sheila

Many thanks for your reply and advicd

After my nhs neuro dr practically shut the door in my face

I did seek the opinion of a nuro surgeon DrAli Nadir Sephahi

After I saw him he suspected nerve root compression or facet joint issue

Ordered an MR full lumbar and spec ct of full spine

He knew and understood my pain and symptoms exactly

See am already in a wheel chair full time

It seems it was right to get these images

Significant structural changes in the lower spine and changes to the distribution of the cauda equina at L3/4 and L5/ S1

So my lumbar lordosis is now exaggerated , I’ve lost allot of muscle control in lower abs , hips etc

L4/5 vertebrae has slipped backwards

the foramen exit has progressed from mild narrowing to moderate affecting the nerve root . The disc has degenerated further and is bulging more , back wards there is also a rupture posterior but doesn’t oculus the space .

there is further degeneration of the facet joints in that area so there is compression on S1 nerve aswell

The combination of all these has not happenned over night

The changes to the cauda equina are new

Uneven distribution and clumping together of tge nerves

Radiographer dr says this appearance is highly suggestive of aracnoiditis , a painful condition where re the middle layer of the dura has become inflamed to such an extent it causes damage to the cauda equina itself

If this is the case there is no reversing it but there are some medications to try .

There are only a few causes of this, trauma to the area , a virus , auto immune ( ie MS )

My bet is the mechanisms of what’s going on in the spine

there is slight curve in spine on one side and mild rotation

I also have a birth defect where L5 is partially fused to S1

There is an incomplete disk which is small and not functional, tge surgeon explained tge disk above is doing the job of two discs hence tge changes

L3/4 is also now bulging backwards and there is narrowing of the foramen there too at present it’s not causing an issue .

I have just had a steroid injection to the nerve root , too early to say if it’s helping with the sciatica on the left

But it will at least indicate where some of my sharp shooting pains are coming from, back spasms due to this are severe and causing further compression affecting the facet joints

It may explain some of my pain symptoms main,y on my left

The back spasms are severe on both sides , but the somatic back pain is on both sides ,

and radiates down both buttocks to my legs down to my feet

I already have severe spasms in my lower legs and feet

The spect scan was ok ish but there is evidence of aorto iliac artery heavy build up

I’ve been taking vit K2 for two years was advised due to being in wheelchair , but have not been able to get any for a few months but I managed to get some finally last week

This is proven to dissolve these deposit

So there an element of vascular compromise which adds to the weakness of both legs

Seems aside from the upper motor myelopathy of the spinal cord these are all new issue

The cauda equina changes put me at future risk of cauda equina syndrome

I’ve updated my nhs neuro and wait his responses , review but am not holding my breath

But he has a duty of care which he needs to uphold

Thee new symptoms possibly started July last year and have just progressed since then over time

He needs to eat a huge piece of humble pie . I feel very let down by the nhs

M friend paid for all tge private stuf

I will see the surgeon early June to discuss

Surgery may have to be an option in the end as these changes will clearly progress ..and the steroid injection may give relief and confirm the source of pain

The nerve root itsel has lost all its fatty covering due to the compression via the foramen exit and the disc bulge

Am not sure if that means it’s beyond recovering if I had surgery

The nerve root symptoms affect my whole left leg right down to the foot and these sharp shooting pains are intense and unpleasant to say the least

I’ve also had many falls out of my wheelchair since Nov 2021 am sure they will not have helped

The spec ct also shows calcification in various parts of my body , not sure if this is normal aging .

my quality of life if not great due to these changes and am doing the bare minimum each day ..but resting out of chair for short periods by 3 pm the back pain is severe , I just need to lay down but I live alone and can’t just stop everything lol

Sorry it’s a long one but I wanted to update you fully on the outcome

Many thanks

E x