Motor neuron disease
Discussion
anonymous said:
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WTF!!! What kind of diagnosis is that. Like being told you've either got pancreatic cancer or indigestion!!! Who the hell gave you that diagnosis, the woman behind the counter in Greggs????You say you're 2 years into it now, I think most types of MND would have progressed significantly over that timescale, so it would be beyond doubt.
TwigtheWonderkid said:
WTF!!! What kind of diagnosis is that. Like being told you've either got pancreatic cancer or indigestion!!! Who the hell gave you that diagnosis, the woman behind the counter in Greggs????
You say you're 2 years into it now, I think most types of MND would have progressed significantly over that timescale, so it would be beyond doubt.
This was my thought. MND is hard to diagnose - especially in the early stages - but progresses quite rapidly. Whilst I am not a clinician, I would have said two years from initial symptoms to now should have made a definitive diagnosis possible and would probably have reached a far more adbpvanced state by now. MND often first presents as cramping and spasms in the arms and legs and loss of co-ordination - have you had any of these?You say you're 2 years into it now, I think most types of MND would have progressed significantly over that timescale, so it would be beyond doubt.
My neighbour was suspected to have MND just under a year ago, now he can't even get up on his own, it usually progresses quite fast as others have said. Giving your circumstances i would worry too much.
A few years ago now I kept having spasms/cramps in my arms and legs along with pins and needles in my hands every morning. It was suspected a trapped nerve, after physio did nothing i had lots of tests in various departments and It turned out to be a thyroid issue, not saying this is the case with you but there are so many things that can give weird symptoms.
A few years ago now I kept having spasms/cramps in my arms and legs along with pins and needles in my hands every morning. It was suspected a trapped nerve, after physio did nothing i had lots of tests in various departments and It turned out to be a thyroid issue, not saying this is the case with you but there are so many things that can give weird symptoms.
Very sorry to hear that. 10 years ago my Mum was diagnosed with MND, though she was far older at 83. I remember taking her to her regular neurologist (she'd been seeing him once a year for some years due to increasing spinal compression near the neck which had required not very successful surgery) and he told me immediately that her symptoms were now of MND not trapped nerves. Possibly her existing condition had masked the MND and it could have been diagnosed a few months sooner - I just don't know.
As others have said, typically MND progresses very rapidly (Stephen Hawkings' type was an exception) so I'd hope you are in the clear after this time.
One revelation to me at the time was being told that the average GP faces just 1 or 2 cases of MND in their working life, which may explain late diagnoses. Hopefully diagnostic techniques have improved over the past decade and you are seeing a decent consultant. And yes, the MNDA is a fine charity.
I do hope you get good news at your next consultation.
As others have said, typically MND progresses very rapidly (Stephen Hawkings' type was an exception) so I'd hope you are in the clear after this time.
One revelation to me at the time was being told that the average GP faces just 1 or 2 cases of MND in their working life, which may explain late diagnoses. Hopefully diagnostic techniques have improved over the past decade and you are seeing a decent consultant. And yes, the MNDA is a fine charity.
I do hope you get good news at your next consultation.
Step mother was diagnosed with it after seeing lots of specialists, each doctor dismissed her symptoms.
She started out slurring her words and having difficulty swallowing, Not sure what advice I can offer other than get a proper diagnosis.
Although if it helps her symptoms progressed within months not two years
She started out slurring her words and having difficulty swallowing, Not sure what advice I can offer other than get a proper diagnosis.
Although if it helps her symptoms progressed within months not two years
anonymous said:
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End of 2013 I found myself in the same situation. Took a bit of hard work to get the GP to do a referral and then I eventually gave up on the NHS and went private. Had an MRI (I think - the one where you wear a brace around your head and get inserted into a scary small machine head first) and saw the consultant at Bupa a week later who confirmed that a trapped nerve in my neck due to cartilage en-growth in my neck / spinal cord was trapping the "nerve movement".The solution. I was always worst in the morning and basically this trapped nerve, which when I slept on my side, with my hand under my face, meant the "nerve" was going the long route around my shoulder, around my elbow and across my wrist (exacerbating previous Carpal tunnels injury). So I was told to sleep at night with my left arm shoved straight in a pillowcase with a pillow in it, to keep my arm straight!!!!!
Of course I still woke in the morn face asleep on hand, but the few hours I wasn't stressing the nerve helped and over about 4 months the "dead / numb / weak" filling was lost in all but one finger....!!!
PM if you want more details, I think I paid about £800 all in for the privates consultations and scans but got a bit back through a work Medicash policy.
king ridiculous mealy mouthed answer! That applies to absolutely everyone who hasn't got MND! Gassing Station | Health Matters | Top of Page | What's New | My Stuff