Ocular symptoms of ptosis and/or diplopia

Appreciate the difficulties this can give with reading/ writing and simple everyday tasks dependent on the severity i.e eating, washing and dressing.

Recognise the need for rest periods when symptoms are present.

Appreciate the use of mestinon and the effect on symptoms - monitor the effect on ptosis/diplopia about 20 mins after taking mestinon and document this if possible.

Recognise the benefit of prisms or lundi loop if being used.

Bulbar symptoms of chewing fatiguability, dysphagia and dysathria / dysphonia

Give serious consideration to the safety of swallow - if necessary pass an NG tube for the provision of medication and food. It is not acceptable to withhold medication because patient requires to be NBM.

Have regular SALT review assessments to ensure improvement in swallow and speech.

If dysphagia an issue and taking an altered diet ensure pyridostigmine (mestinon) is taken about 20 mins prior to eating (not relevant with NG feeding) to achieve best muscular response for chewing and swallowing meals

Encourage patient not to embark upon long conversations if dysarthic. Allow for regular rest periods during conversations and if necessary provide alternative aids in the interim i.e pad and pen.

Limb and Neck Weakness 

Allow for regular rest periods when carrying out any physical task.

Assistance may be required with simple task such as washing and dressing, drying hair, brushing teeth. Regular rest periods may be needed during and/or after activity.

Respiratory Involvement

It is important to have a baseline reading from when a patient first comes into hospital, this allows for prompt recognition of any deterioration.

FVC (forced vital capacity) should be carried out regularly - if there is respiratory involvement at least 4 times per day.

If there is a change in condition FVC should also be performed.

Carry out regular vital signs assessments as normal.

Monitor the effects and side effects of medications. If on pyridostigmine monitor for side effects of diarrhoea, cramps and introduce loperamide /  propantheline if necessary. Also monitor for symptoms of overdose (cholinergic crisis), excess saliva, watery eyes, and extreme muscle weakness shortly after taking pyridostigmine and respiratory problems/ failure.

Self-medication of pyridostigmine (mestinon) is advisable and should be permitted if at all possible as the requirement for this medication to be taken at very regular intervals often does not fit in with the drug rounds in many wards.

If on steroids (prednisolone) monitor blood glucose levels for effect on any existing diabetes or to ensure not developing steroid induced diabetes.

Monitor bloods if on immunosuppression. Be vigilant for infections and give careful consideration to the treatment of such. Not all antibiotics are safe to use!

Most Importantly

Recognise and appreciate the fatiguability element of myasthenia gravis. There may be points where a patient can carry out a task simply and other point where they are particularly weak. Make allowance for this. Don’t assume because they could do it yesterday or this morning they should be able to do it again now.

Advice from Fellow Practitioners