I saw my local consultant this morning. At the end he asked if I would be willing to talk to some fourth year medical students. I didn't hesitate as anything that increases awareness of this disease is a good thing in my view. My doctor was abysmal despite my many visits to him and referred me to an ENT. An earlier diagnosis would have allowed me to bank my voice. The ENT said it was vocal tension and then a private neurologist suspected dystonia.
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Diagnosed 3rd November 2021 Bulbar Onset -
I would also do this. A neurologist, who knew I was waiting to see a neurologist who specialises in mnd decided to tell me and my partner it was not mnd. 3 wks later being told it was.
Basically a red flag check ought to be put in place re mnd symptoms. It was a physio that flagged mine and I am so grateful for that.
Good on you Gill.xDiagnosed May 2021 bulbar onset als. -
Can’t think of any downsides to talking to the medical students… so a great thing to do. It’s said that many GPs don’t see a case of MND during their careers. The more that can be done to change that, the better.Diagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
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I agree. The medical profession seem really unaware of mnd. Learning the hard way that the same goes for ftd.
I'm doing as much as I can with webinars, questionnaires and researchers gathering information on both. It might just help.
when i can think of something profound i will update this.Comment
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GillB Good for you Gill 👍👍
I do the same at every opportunity not only with the med students, but with student nurses, physios, OTs etc - I'm not eligible for any drug trials, so being a lab rat and a guinea pig is the only way I can help future HCPs. xxDiagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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I’m all for trainees being at appointments. They need to be aware and learn, it’s the only way to learn.Comment
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Our GP obviously hasn't come across MND before. After hearing of hubbies diagnosis said oh at least its not a brain tumour.
We on the other hand were almost hoping it was (a brain tumour) because at least there would have been a chance of a cure.Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze
Sense of humour intact throughout.
Sadly passed away peacefully 2/9/22Comment
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MMG - I had a very similar response from my GP too xDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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My GP got teary and I thought he was going to full on cry… it was very touching, but slightly disconcertingComment
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Talking of learning about MND, has anyone looked at or experienced the free online course for carers about MND that I saw mentioned in Thumb print? I pointed it out to the boss of my carers agency.Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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I mean care workers not carersDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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I had a look at it, yes Heather.Originally posted by Heather R View Post
It's an 8 hour course with an Introduction and 6 units, all of which you must complete a quiz before advancing to the next unit.
It goes into detail explaining what MND is but is light on the practicalties of how to care for a person on a micro level so, for example, if you're hoping carers will learn how to shower a person or dress somebody who can't move any limbs nor support their head, things like that are not covered.
If a carer is willing to spend the time doing it, they'll know more about MND than they did before, that's for sure. xxLast edited by Ellie; 1 May 2022, 18:25.Diagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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