For those who worry about ALS

BFS Online Support Group

Moderators: JohnV, Arron, garym

For those who worry about ALS

Postby Tiredofbfs on February 6th, 2014, 1:37 pm

Hello All,

I have visited the mnda association and met with some neurologists and gave me a brochure with the most asked questions by patients who believe they have MND. I am sure these information have been shared before but I wanted to give a piece of mind for those who still believe that fasiculations are indicative of MND. here are the questions/answers to some of them that I find relevant to all of you.

I am experiencing fasciculations, (muscle twitching), does this mean I have MND?

Fasciculations (muscle twitching) are experienced by up to 70% of the general population. Sometimes the twitching can be confined to one area of the body, at other times they may be felt in several areas at once.
Fasciculations on their own can be a consequence of stress, viral infection, or general ill health. They can also be present in the body for no known reason and many people live with them on a daily basis for much of their life. Fasciculations are usually only associated with a neurological condition when other symptoms are present.

I have tingling and numbness in my hands, feet and limbs, is this a symptom of MND?

Tingling and numbness are associated with some neurological conditions, but MND is not one of these. If this symptom is a constant problem see your GP who may refer you to a neurologist if he/she feels you may have a problem.

I sometimes get a burning sensation in my limbs, can this be associated with MND?

MND affects the motor neurones, which sit in close proximity to the sensory neurones in the brain. The sensory neurones are not affected by MND but because of this closeness, they can occasionally produce sympathetic reactions causing different sensations in the body.

I get very tired, I seem to have no energy, and I am having fasciculations. Is this MND?

MND can indeed make people feel very tired and lethargic but MND will also be accompanied by other symptoms. If you are feeling very tired and are having fasciculations but no other problems, the fasciculations may be a result of your body responding to the tiredness. Consult your GP who will be able to carry out tests to rule out other causes.

I keep tripping up and one of my legs looks thinner than the other, should I see my doctor? I feel fine in myself.

It would be wise to see your GP who may refer you to a neurologist if he feels you may have a problem. Weakness and wasting in a leg does not mean you have MND as there are several conditions which can cause this type of symptom.

My hands feel weak and stiff; I am finding it difficult to turn my front door key, could this be a symptom of MND?
Weakness in the hand may indicate a neurological problem, but it can also be caused by increasing age and joint problems, or occasionally a trapped nerve. If you have no other problems you should see your GP who will be able to ascertain if you need to be referred to the hospital for tests.

What Does It Affect?

MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones.

Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

The muscles first affected tend to be those in the hands, feet and mouth, dependent on which type of the disease you are diagnosed with.

MND does not usually affect the senses or the bladder and bowel. Some people may experience changes in thinking and behaviour, often referred to as cognitive impairment, but only a very few will experience severe cognitive change.

The effects of MND can vary enormously from person to person, from the presenting symptoms, and the rate and pattern of the disease progression, to the length of survival time after diagnosis.


Motor Neurone Disease can be extremely difficult to diagnose for several reasons:
•It is a comparatively ‘rare’ disease
•The early symptoms can be quite slight, such as clumsiness, mild weakness or slightly slurred speech, all of which can be attributed to other reasons. It can be some time before someone feels it necessary to see a GP
•The disease affects each individual in a different way, so there is no definitive set of symptoms.

There is no specific way of testing for MND, which means diagnosis requires the elimination of other potential conditions. See Tests.

Who is at risk of developing MND?

In recent years there is evidence to suggest the incidence of Motor Neurone Disease (MND) is increasing. This could possibly be due to more accurate diagnostic testing. Also, as people are generally living for longer, the incidence of a disease more common in older people will continue to increase.

MND Statistics

It is difficult to be exact, but statistics for Motor Neurone Disease tell us that:
•It can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70
•Men are affected approximately twice as often as women
•The incidence or number of people who will develop MND each year is about two people in every 100,000
•The prevalence or number of people living with MND at any one time is approximately seven in every 100,000

What causes MND?

Each individual may be affected by a different combination of triggers, both genetic and environmental, which makes it very difficult to determine precise markers for the disease. If you would like to know more about developments within research, you may wish to refer to our research pages and information about the causes of the disease.

TEST FOR MND (very important look at the EMG Test and how sensitive it is)

Electromyography (EMG): is sometimes called the needle test, because fine needles are used to record the naturally-occurring nerve impulses within certain muscles. Recordings are usually taken from each limb and the bulbar (throat) muscles. Muscles, which have lost their nerve supply, can be detected because their electrical activity is different from normal healthy muscles. The EMG can be shown as abnormal even if that particular muscle is as yet unaffected. It is a very important diagnostic test.

Nerve Conduction Tests: may be carried out at the same time as the EMG. An electrical impulse is applied through a small pad on the skin. This measures the speed at which your nerves carry electrical signals.

Common symptoms and effects of MND (notice fasiculations is not mentioned because twitching alone is meaningless)

Pain and discomfort: are not caused directly by MND, but may have several indirect causes. Your GP should be able to prescribe a suitable painkiller.

Muscle cramps and spasms: may be relieved by changing position when relaxing in a chair or bed. If this is not helpful your doctor may be able to provide a muscle relaxant.

Stiff joints: can be helped with gentle exercise. A physiotherapist will be able to determine an exercise programme appropriate for your needs.

Incontinence: is not usually associated with MND, but may occur if mobility is restricted and getting to the toilet becomes more difficult. Your occupational therapist and specialist nurse can advise you if this is a problem.

Bowel problems: are not usually caused directly by MND, but constipation may occur due to restricted mobility and/or changes to diet. Increasing fluid and fibre may help, or ask your doctor to prescribe a laxative. Diarrhoea can sometimes happen with a severely constipated bowel. Ask your district nurse or GP for advice.

Speech and communication issues: occur for some people living with MND. A speech and language therapist (SaLT) can help with techniques and suggestions for communication aids.

Eating and drinking difficulties: may become an issue if swallowing is affected. A speech and language therapist (SaLT) can help with techniques and a dietitian can advise on changes to diet or equipment to help maintain calorie intake.

Saliva and mucous: may cause issues if problems occur with swallowing. Saliva may pool in the mouth or it may become thick and sticky. In both cases your GP will be able to prescribe medication to help.

Coughing and a feeling of choking: may occur as a result of food or saliva becoming lodged in the airway. A a speech and language therapist (SaLT) can teach you techniques to help manage these episodes.

Breathing: Respiratory muscle weakness affects most people with MND. When this happens you will need a breathing assessment from a respiratory consultant.

Cognitive changes: may occur for some people living with MND, where difficulties with memory, learning, language and poor concentration may be experienced. This is commonly known as cognitive change. Some of these effects may be quite subtle, while for others the change can be more pronounced and noticeable.

Hope this helps
Selfless giver of time
Selfless giver of time
Posts: 122
Joined: February 13th, 2013, 11:28 am

For those who worry about ALS



Return to The Support Group

Who is online

Users browsing this forum: No registered users and 5 guests