Oluwafunmilayo Khafasat Fashina Foundation website has been designed to assist those living with Multiple system atrophy (MSA).
Treatment for patients with MSA involves a combination of medication, specialised equipment and the use of therapists to manage individual symptoms. Members of a multidisciplinary team include:
The complex nature of MSA means that the best treatment is gained from a multidisciplinary team approach, involving a group of health and social care professionals.
Ideally you will be supported by your GP who will act as a care coordinator and refer you to other members of the multidisciplinary team. It is quite possible your GP has not previously seen a patient with MSA but FFFoundation can provide specific medical information to your doctor. Likewise members of the multidisciplinary team may not have treated anyone with MSA but do not be discouraged by this. Ask them them to contact FFFoundation for information and advice.
What medication can I take?
Medication regimes will vary depending on your symptoms. Medications are very individual and what works for one person may not be effective for another. Your specialist will prescribe the best combination to meet your needs.
Drugs to help stiffness and slowness are the same drugs used in Parkinson’s disease (PD). They are often not as effective in MSA and can make blood pressure problems worse. It may take time to find what suits you and if a medication is not useful it can be reduced or discontinued on the advice of your specialist.
Physiotherapy can also prove useful with tips to get you moving. This is important as inactivity may worsen the problem.
Feeling unsafe on stairs may be due to problems with balance and people often feel they need to use furniture for support. Physiotherapists and occupational therapists can provide advice and equipment to help you move safely.
Poor bladder control
Poor bladder emptying can also be a problem and you may not empty completely. If you are leaving behind a residual volume, this can predispose to urine infections. Currently, there is no effective medication for this and bladder surgery is very unlikely to improve this problem. Intermittent catheterisation either by yourself or a carer is the best management for this. A continence advisor can help you learn the technique.
People with MSA produce less urine during the day and more at night. If this problem is resulting in disturbed sleep, medication (DDAVP) can help relieve the symptoms by reducing urine production overnight.
You may also consider using a commode or urinal at the bedside to reduce the effort of getting to the bathroom. This is especially important if you have low blood pressure (postural hypotension) or are prone to falls.
Constipation is common in MSA. It is to be avoided where possible as straining could affect your blood pressure. It is important to drink plenty of fluids and eat a well-balanced diet. Dietary fibre, especially cereal-derived fibre, may not help with bowel emptying, and may actually make you more bloated. Daily medication to prevent constipation (but not fibre laxatives) is often needed to maintain a regular bowel habit. Suppositories can be helpful to avoid straining.
For men, erectile dysfunction (unable to achieve or sustain an erection) is often the first symptom of MSA. Men often take medications for this problem such as sildenafil (Viagra), tadalafil (Cialis) or vardenafil (Levitra). However occasionally these medications can worsen blood pressure control. Seeking help on this issue is important and you should not be embarrassed to ask your doctor.
Dizzy with movement
Dizziness may be due to your blood pressure falling when you stand up or change position. This drop in blood pressure is called postural hypotension.
There are several things you can do to relieve this symptom. These include increasing your fluid and salt intake as well as leg exercises to help your blood flow in your calves. It is important that you avoid sudden changes in position like quickly rising to your feet and plan your periods of activity for later in the day. Medication to help blood pressure can be very effective.
Antibiotics should be prescribed at the first signs of a bacterial infection. Any infection in someone with MSA can worsen symptoms like postural hypotension and should be promptly treated.
If coughing during meals is a problem it could be a sign that your swallowing is faulty. Coughing is a normal reaction to help prevent food going into your lungs and causing infection. A speech and language therapist can assess the strength of your swallow and, together with a dietician, will advise on the best type of food for you.
You may experience irregular breathing at night. Stopping breathing at night (sleep apnoea) can sometimes happen and may be associated with snoring. If you feel tired and lethargic during the day, it may mean that you have a sleep disturbance.
Sleep studies may be done to see how this symptom is affecting you and it may be necessary for you to have some breathing assistance at night from a piece of equipment called CPAP(see glossary). This equipment can help improve your quality of sleep and can travel with you wherever there is electrical power.
Laughing and crying at the silliest things can be a problem in MSA and is not a sign of dementia. It is thought to be due to nerve cell loss in part of the brain which controls emotional expression. Even when people cry frequently it may not be a sign of depression. However, if excessive crying is bothering you anti-depressants may help.
There are many gadgets, aids and pieces of equipment that may prove useful to help overcome some of the symptomatic difficulties. However, these can be expensive so it is worth discussing with your occupational therapist, physiotherapist or speech and language therapist before purchasing. It may be possible to acquire equipment via your local authority.
Some people with MSA find complementary therapies helpful, particularly to aid relaxation, and improve comfort and general well-being. Some therapies can help specifically with muscle spasm and pain management. Discuss with your specialist or GP before trying any complementary therapies.
It is important that you tell any complementary therapist that you have MSA. Some treatments may lower your blood pressure further so you should let your therapist know if you have low blood pressure, particularly postural hypotension.
People have differing ways of coping with life experiences generally, and this applies to health too. If you feel it could be useful, it may be beneficial to access counselling early and build a rapport with the counsellor.