Any Radiographers/Dr's about so so worried

[marthasGinyard]

I think I have MND and my spinal MRI is Below

Involuntary swallowing nocturnally can be a symptom of dysphagia.

I also am breathing paradoxally especially at night.

Have problems breathing when I'm lying flat.

My issues are bulbar mainly. Tongue is affected. Throat was first sign in July. I never equated it to anything really. Internal vibrations none of it worried me.

The constant fasics and on tongue are really hard to deal with.

I'm very aware of the diagnosis average 6-9 months.

I'm praying it's a mimic of course but with everything else slowly being ruled out it's hard.

Even my GP said when my Brain MRI was clear 'I know this is not what you wanted to hear' brings it home to me.

I know what anxiety can do. I also know when I'm being told by professionals it's not off the table then of course I worry.

I have no experience with this OP but the medical language you've used throughout this thread to describe your symptoms isn't usual for a layperson. It suggests you've spent a lot of time googling to build up a case.

@marthasGinyard

Involuntary swallowing nocturnally can be a symptom of dysphagia.

I also am breathing paradoxally especially at night.

Have problems breathing when I'm lying flat.

My issues are bulbar mainly. Tongue is affected. Throat was first sign in July. I never equated it to anything really. Internal vibrations none of it worried me.

The constant fasics and on tongue are really hard to deal with.

I'm very aware of the diagnosis average 6-9 months.

I'm praying it's a mimic of course but with everything else slowly being ruled out it's hard.

Even my GP said when my Brain MRI was clear 'I know this is not what you wanted to hear' brings it home to me.

I know what anxiety can do. I also know when I'm being told by professionals it's not off the table then of course I worry.

Sorry but I still don't know what nocturnal involuntary swallowing is and what it has to do with MND.

People with bulbar MND tend to have difficulty swallowing at all.

I'm not a doctor - but have seen MND, including the swallowing difficulties, up close - and nothing you've described sounds particularly like MND.

Not trying to 'build up a case'

Just have had the strangest symptoms so have looked them up as I'm sure others have in the past.

I didn't start this thread to have to defend myself continually.

It was for Health professionals view and I thank those who have the knowledge who have offered their view.

Even my GP said when my Brain MRI was clear 'I know this is not what you wanted to hear'

In the kindest possible way, why would anyone NOT want to hear their brain MRI was clear?

@Bluesheep8

Even my GP said when my Brain MRI was clear 'I know this is not what you wanted to hear'

In the kindest possible way, why would anyone NOT want to hear their brain MRI was clear?

Not so much with brain MRIs but certainly with spinal MRIs if there are symptoms consistent with MND then most people DO hope that problems are found on the spinal MRI. Problems that could explain the symptoms (as MND doesn't normally show much on an MRI).

Simply because MND is such a horrible disease - it's usually infinitely preferable to have something else that might explain the symptoms and perhaps be treatable, or at least not be progressive.

I've seen this - someone hoping their MRIs would show up something, anything, that could explain the symptoms - and when they didn't, eventually getting diagnosed with MND.

@bobbie42

Thank you for explaining. I understand now, my apologies

[quote Bluesheep8]@bobbie42

Thank you for explaining. I understand now, my apologies[/quote]
No problem.

MND is slightly unusual in this regard as it is usually diagnosed only after eliminating other possibilities.

I had a cranial csf leak in April which I believe in my mri the narrowing of canal, moulding of cord can be to do with the csf fluid.

I asked on Quora and a radiologist responded it was concerning.

@marthasGinyard

I had a cranial csf leak in April which I believe in my mri the narrowing of canal, moulding of cord can be to do with the csf fluid.

I asked on Quora and a radiologist responded it was concerning.

Again - none of that would have anything to do with MND.

MND does not cause any of those things.

You're using a lot of medical terminology which would be unfamiliar to most lay people. I'm guessing you spend hours googling this stuff.

I'm a dysphagia specialist and I'm confused over what you mean by involuntary nocturnal swallowing? We expect people to swallow around once a minute over night while sleeping and it's completely involuntary - that's normal, it isn't a sign of dysphagia. The absence of it would but it would be coupled with drenched pillows, wet voice and coughing on waking on unswallowed secretions.

SLTs see a lot of MND and are brilliant at spotting the first signs and getting referrals through. It's rare but we see almost every case. MND presents in a fairly typical easy to spot way. You're describing some signs which are loosely related to MND but not really what I'd normally see as it is very specific. Trust the neurologists and the test results.

An untreated csf leak after a breakdown won't have done my nervous system much good at all and opened a route for all kinds.

Yellow may I pm you

@marthasGinyard

An untreated csf leak after a breakdown won't have done my nervous system much good at all and opened a route for all kinds.

But it's not a cause of MND.

Does anyone understand EMG's?

Thanks

'SLTs see a lot of MND and are brilliant at spotting the first signs and getting referrals through. It's rare but we see almost every case. MND presents in a fairly typical easy to spot way. You're describing some signs which are loosely related to MND but not really what I'd normally see as it is very specific. Trust the neurologists and the test results'

Yes I saw one she was lovely with over 25 years experience. She has fast tracked me to ENT.

Terrified

Dr has ordered CT scan for tmrw as have had brain MRI but said a CT scan is the best to look for historical/current Cranial Csf leaks.

I've had 2 CT scans

Sorry

In last couple of years and I'm aware it's a lot of radiation but my neurological symptoms are worsening.

Is anyone familiar with this procedure.