Painless, progressive weakness Could this be Motor Neurone Disease?

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1 Painless, progressive weakness Could this be Motor Neurone Disease?

2 The importance of early diagnosis removal of uncertainty for the person experiencing symptoms allowing for care and support to start as early as possible enabling the person with MND and their carer to consider and plan for their future increasing the window of opportunity to research into, and better understand, the condition

3 1. Does the patient have one or more of these symptoms?

4 Limb features

5 I m not in pain but don t have the strength I used to when doing everyday things carrying shopping, undoing jars that kind of thing.

6 I m not in pain but don t have the strength Limb features I used to when doing Focal weakness everyday things carrying shopping, undoing jars that kind of thing.

7 It is as if I can t control my fingers. I m having difficulty with simple things - unscrewing the petrol cap, doing up zips and buttons.

8 It is as if I can t control my fingers. I m having Limb features difficulty with simple Loss of dexterity things - unscrewing the petrol cap, doing up zips and buttons.

9 My foot and leg feel heavy and seem to drag when I walk sometimes I fall over because of it.

10 My foot and leg feel heavy and seem to Limb features drag when I walk Falls/trips from foot drop sometimes I fall over because of it.

11 I get cramps in my leg.

12 I get cramps in my leg. Limb features Cramps

13 70% of patients present with limb symptoms

14 Bulbar features

15 I am finding that I sometimes slur my words other people are noticing it too.

16 I am finding that I sometimes Bulbar features slur my words Dysarthria other - slurred people or quiet speech often when tired are noticing it too.

17 I have difficulty swallowing it feels like I cannot get my food to go down, almost a choking sensation.

18 I have difficulty swallowing Bulbar features it feels Swallowing difficulties like Liquids I cannot and/or solids get my food Excessive to go saliva down, Choking sensation especially almost when lying a choking flat sensation.

19 My tongue occasionally twitches and flickers.

20 My tongue occasionally Bulbar features twitches Tongue fasciculations and flickers.

21 25% of patients present with bulbar symptoms

22 Respiratory features

23 I feel tired during the day I ve not felt like that before. I don t seem to have any energy.

24 Respiratory features I Excessive feel tired daytime during sleepiness Fatigue the day I ve not felt like that before. I don t seem to have any energy.

25 When I wake up I am still tired and I feel a bit hung-over, my head is muzzy.

26 When I wake up I am still tired and I feel a bit hung-over, my Respiratory head is features muzzy. Early morning headache

27 I get quite breathless for example if I walk fast or run for the bus or train.

28 I get quite breathless for example if I walk fast or run for the bus or train. Respiratory features Shortness of breath on exertion

29 When I go to bed and lay down I find it harder to breathe it is better when I sit upright.

30 Respiratory features Orthopnoea When I go to bed and lay down I find it harder to breathe it is better when I sit upright.

31 Respiratory problems are often a late feature of MND and an unusual presenting feature. Patients present with features of neuromuscular respiratory failure.

32 Cognitive features

33 Frank dementia at presentation is rare

34 I find myself crying for no real reason sometimes.

35 I find myself crying for no real reason Cognitive features Emotional lability sometimes.

36 2. Is there progression?

37 Supporting factors Asymmetrical features Age MND can present at any age Positive family history of MND or other neurodegenerative disease Factors NOT supportive of MND diagnosis Bladder / bowel involvement Prominent sensory symptoms Double vision / Ptosis Improving symptoms If the patient has one or more symptoms and there is progression query MND and refer to Neurology. If you think it might be MND please state explicitly in the referral letter. Common causes of delay are initial referral to ENT or Orthopaedic services.

38 The Red Flags tool

39 Painless, progressive weakness Could this be Motor Neurone Disease? 1. Does the patient have one or more of these symptoms? 2. Is there progression? If yes to 1 and 2 query MND and refer to Neurology If you think it might be MND please state explicitly in the referral letter. Common causes of delay are initial referral to ENT or Orthopaedic services.

40

41 Additional resources: MND Association downloads and publications at Copyright MND Association 2014

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