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DO YOUR MUSCLES LOCK UP?

Do the muscles in your hands, legs or eyelids sometimes “get stuck” when used? It could be a sign of NDM.

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You can also complete The Myotonia Symptom Checker to help determine if your symptoms could be related to NDM.

MYOTONIA SYMPTOM CHECKER

An awareness campaign by Lupin Neurosciences designed for people living with NDM

I'm worried about my symptoms

Learn about NDM

Learn about non-dystrophic myotonia, its causes and treatment.

What is NDM?

NDM is a group of rare conditions that affects one’s muscles. Only around 1 in 100,000 people worldwide suffer from these conditions, but there are countries where NDM is more common.1 There are several different forms of NDM, with 4 main types commonly known as Becker Myotonia Congenita, Thomsen Myotonia Congenita, Paramyotonia Congenita (Eulenburg) or Hyperkalemic periodic paralysis (hyperPP).1,2

NDM disorders typically affect the muscles, with patients most commonly having an inability to relax muscles immediately after they have been used, which is called myotonia.1 Patients experience myotonia symptoms differently, describing their experience as stiffness, cramps or “locking” of their muscles during everyday tasks and movements.3 In addition to patients experiencing their symptoms differently, patients often describe their symptoms as unpredictable as they may differ from time to time4,5 and they may range from subtle effects on muscles that have little impact on the ability to move to more severe symptoms that significantly affect daily activities.1,3

Struggling to open your hand after clenching your fist may be a sign that you have NDM.6

What’s your NDM story?

speech

Share your story of your journey with NDM here

You are free to share your story in writing, video, audio, painting, or any other form that helps you tell your story about your journey with NDM.

Share your story

Share your story

If you live with or care for a person with NDM, and you would like to help others understand what it means to live with this disease, we invite you to share your story with us. Stories will be published on this platform to further “unlock” the different ways people experience symptoms associated with NDM.

Together we can “unlock” NDM to create awareness, increase understanding and empower those living with NDM.

The voices of people living with NDM
References
  • Hahn C, Salajegheh MK. Iran J Neurol 2016; 15(1):46–53
  • Trivedi JR, et al. Brain 2013;136:2189–2200
  • Nowak U, et al. Presented at WMS20: Virtual Congress. 28 Sep–20 Oct 2020
  • Heatwole CR, et al. Muscle Nerve 2013;47:632–48
  • Trip J, et al. J Neurol 2009;256:939–47
  • Heatwole CR, et al. ASENT 2007 Apr;4:238-251

Download the media kit

Non-dystrophic myotonia

Download here

What's your NDM story?

hj’s story

“Sometimes my muscles remain tense and stiff but, at the same time, they lose all strength and then I lose control.”
— HJ, Paramyotonia congenita

rs’s story

“When my muscles don’t work properly, it is difficult to achieve my daily goals.”
— RS, Becker myotonia

sl’s story

“I had to continually think up excuses. Later, I had to be ‘one step ahead’ in order to be able to go up the stairs alone with no one watching, especially not my school friends.”
— SL, Thomsen myotonia

me’s story

“I can no longer pick up my son or hold him when he is given to me.”
— ME, Paramyotonia congenita

KT’s story

“I can no longer pick up my son or hold him when he is given to me.”
— KT, Becker myotonia

pd’s story

“You often just get used to things in order to disguise the handicap. You don’t want to be reminded about it the whole time.”
— PD, Becker myotonia

AB’s story

“Speech is often difficult, which limits what I can do enormously. It’s also a massive challenge for me to conceal this.”
— AB, Paramyotonia congenita

be’s story

“I often feel as though I’m paralyzed and absolutely incapable of movement.”
— BE, HyperPP

What’s your NDM story?

speech

Share your story of your journey with NDM here

You are free to share your story in writing, video, audio, painting, or any other form that helps you tell your story about your journey with NDM.

Share your story

Foods to avoid on a low-potassium diet*

  • Fruit1,2
  • Vegetables1,2
  • Beans/legumes1,3
  • Other1-3
  • Avocado
  • Artichoke
  • Baked beans
  • Bran cereal
  • Apricots
  • Beetroot
  • Kidney beans
  • Dairy (eg yoghurt, milk)†
  • Bananas
  • Brussel sprouts
  • Lentils
  • Nuts
  • Dried fruits eg dates, raisins and prunes
  • Broccoli (cooked)
  • Brown rice
  • Grapefruit
  • Okra
  • Salt substitutes
  • Kiwi
  • Parsnip
  • Wholewheat bread and pasta
  • Mango
  • Potatoes (processed or with skin on)
  • Melons
  • Cooked spinach
  • Nectarines
  • Tomato (concentrated, eg. Tomato puree)
  • Oranges and orange juice
  • Papaya
  • Pomegranate and pomegranate juice

  • Fruit1,2

    Avocado

    Apricots

    Bananas

    Dried fruits eg dates, raisins and prunes

    Grapefruit

    Kiwi

    Mango

    Melons

    Nectarines

    Oranges and orange juice

    Papaya

    Pomegranate and pomegranate juice

  • Vegetables1,2

    Artichoke

    Beetroot

    Brussel sprouts

    Broccoli (cooked)

    Okra

    Parsnip

    Potatoes (processed or with skin on)

    Cooked spinach

    Tomato (concentrated, eg. Tomato puree)

  • Beans/legumes1,3

    Baked beans

    Kidney beans

    Lentils

  • Other1-3

    Bran cereal

    Dairy (eg yoghurt, milk)†

    Nuts

    Brown rice

    Salt substitutes

    Wholewheat bread and pasta

*Meat and fish contain a moderate amount of potassium but they are an important source of protein so shouldn’t be avoided; †Dairy products contain potassium but are an important source of calcium so should be consumed in moderation
References
  • WebMD. Low-potassium diet: what to know? Available at: https://www.webmd.com/food-recipes/low-potassium-diet-foods ; Accessed March 2021
  • St Georges Kidney Patients Association. Eating on a low potassium diet. Available at: https://www.sgkpa.org.uk/main/eating-well-on-a-low-potassium-diet-2 ; Accessed March 2021
  • NHS. Information for people on a low potassium diet. Available at: https://www.nth.nhs.uk/content/uploads/2019/02/PIL1061-Information-for-people-following-a-low-potassium-diet-Final-11.02.19-LP.pdf ; Accessed March 2021
  • NDM type1
  • Symptoms2,3
  • Which type of ion channel? 2,3
  • How is it inherited?2,3

  • Thomsen myotonia congenita

    (also called Thomsen myotonia or autosomal dominant myotonia congenita)
  • Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, and may ease as you ‘warm up’.
  • Chloride (Cl-)
  • Autosomal dominant

  • Becker myotonia congenita

    (also called Becker myotonia, Becker disease, generalized myotonia, recessive generalized myotonia or autosomal recessive myotonia congenita
  • Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, or if you are startled, and may ease as you ‘warm up’. Sometimes people with Becker myotonia congenita experience temporary weakness after an episode of myotonia.
  • Chloride (Cl-)
  • Autosomal recessive

  • Paramyotonia congenita

    (Also called Eulenburg disease, paralysis periodica paramyotonia, paramyotonia congenita of von Eulenburg, PMC or von Eulenburg’s disease)
  • Myotonia mainly affects hands and face and gets worse with exercise. Cold is also a key trigger of myotonia, and muscle weakness after an episode of myotonia may last hours or sometimes days.
  • Sodium (Na+)
  • Autosomal dominant

  • Sodium channel myotonia, SCM:

    myotonia permanens and myotonia fluctuans, acetazolamide-responsive myotonia (ARM) previously known as Potassium aggravated myotonias (PAM)
  • Potassium-aggravated myotonia is a rare form of NDM that affects all areas of the body. Myotonia attacks are triggered by eating potassium-rich foods. Symptoms may fluctuate widely from day to day (myotonia fluctuans) or are constant and severe (myotonia permanens).
  • Sodium (Na+)
  • Autosomal dominant

  • Other closely related sodium disorders with myotonia

    (including hyperkalemic paralysis or hyperPP)
  • Myotonia is usually mild, and often involves the eyelids, hands, and tongue. Attacks of weakness can occur at any time and are commonly triggered by rest following exercise, fasting, eating potassium-rich foods or stress.
  • Sodium (Na+)
  • Autosomal dominant
References
  • Stunnenberg B. Muscle Nerve. 2020 Oct; 62(4): 430–444
  • Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
  • Matthews E, et al. Brain 2010:133; 9–22

  • NDM type1

    Thomsen myotonia congenita

    (also called Thomsen myotonia or autosomal dominant myotonia congenita)

    Becker myotonia congenita

    (also called Becker myotonia, Becker disease, generalized myotonia, recessive generalized myotonia or autosomal recessive myotonia congenita

    Paramyotonia congenita

    (Also called Eulenburg disease, paralysis periodica paramyotonia, paramyotonia congenita of von Eulenburg, PMC or von Eulenburg’s disease)

    Sodium channel myotonia, SCM:

    myotonia permanens and myotonia fluctuans, acetazolamide-responsive myotonia (ARM) previously known as Potassium aggravated myotonias (PAM)

    Other closely related sodium disorders with myotonia

    (including hyperkalemic paralysis or hyperPP)

  • Symptoms2,3

    Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, and may ease as you ‘warm up’.

    Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, or if you are startled, and may ease as you ‘warm up’. Sometimes people with Becker myotonia congenita experience temporary weakness after an episode of myotonia.

    Myotonia mainly affects hands and face and gets worse with exercise. Cold is also a key trigger of myotonia, and muscle weakness after an episode of myotonia may last hours or sometimes days.

    Potassium-aggravated myotonia is a rare form of NDM that affects all areas of the body. Myotonia attacks are triggered by eating potassium-rich foods. Symptoms may fluctuate widely from day to day (myotonia fluctuans) or are constant and severe (myotonia permanens).

    Myotonia is usually mild, and often involves the eyelids, hands, and tongue. Attacks of weakness can occur at any time and are commonly triggered by rest following exercise, fasting, eating potassium-rich foods or stress.

  • Which type of ion channel? 2,3

    Chloride (Cl-)

    Chloride (Cl-)

    Sodium (Na+)

    Sodium (Na+)

    Sodium (Na+)

  • How is it inherited?2,3

    Autosomal dominant

    Autosomal recessive

    Autosomal dominant

    Autosomal dominant

    Autosomal dominant

References
  • Stunnenberg B. Muscle Nerve. 2020 Oct; 62(4): 430–444
  • Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
  • Matthews E, et al. Brain 2010:133; 9–22