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Date: 1 December 2020
Multiple sclerosis questions and answers
- How can I take part in MS-related research?
- What do I do if I'm having a relapse?
- Is MS hereditary?
- How do I know if suggested treatments are reliable for MS?
- What do I do if I hear something in the news about MS and I want to find out more?
- I have fatigue. What can I do?
- I have some problems with my bladder
- How can I access a wheelchair?
- How do I access equipment?
- How do I get a blue badge?
- Is there a special diet for MS?
The Multiple Sclerosis (MS) Team at University Hospitals Birmingham NHS Foundation Trust (UHB) is keen to involve people with MS in research as this is a way of helping to advance knowledge and understanding of the disease. This can in turn help improve care for patients with MS.
Research that people with MS can be involved in may vary from something like trials of new medications to looking at how information is provided to people.
There may or may not be projects which you can be involved in at a given time, but please feel free to ask. We are happy to keep a record of people with MS who express an interest in future research with a view to letting them know when opportunities arise.
An MS relapse can be defined as the occurrence of new symptoms or the re-occurrence of old symptoms which last at least 24 hours. When experiencing a relapse, a person typically finds that the symptoms usually come on over a short period of time – generally hours or days. The strength of a relapse can vary, from mild to severe.
Typical MS symptoms that occur in a relapse include:
- visual loss
- double vision
- bladder disturbance
Symptoms may occur together.
Other symptoms of MS, like fatigue or pain, are more difficult to categorise. They may not have a clear-cut beginning, or they may persist.
If you think you may be having a relapse and are a patient under the care of the MS nurses at the Queen Elizabeth Hospital, please contact the MS Support Team (you do not need to go via your GP unless you chose to do so).
Telephone: 0121 371 5799
During your call you will be asked some questions regarding your symptoms and their duration. You will be asked if you have or have had an infection or a virus. This is because infections and viruses can cause new symptoms or increase existing symptoms.
Although MS has been recognised for more than 150 years, its cause remains unknown. The theory that is widely held is that MS is an autoimmune disease. This means that the body’s own immune system (which generally should only target invading germs) becomes mixed up and ends up attacking itself. In the case of MS, the immune system attacks the nerve coating (myelin) within the central nervous system.
Because the cause of MS is still unknown, many ask if MS is hereditary. The simple answer is no, it is not directly inherited and the majority of people who develop MS have no previous family history of the condition. There are some instances where other family members develop MS, but is more likely that this will not happen.
There is no single gene that causes the condition, but it is possible that a combination of genes make some people more susceptible to developing MS. To complicate matters further though, these genes are also common in the general population. It certainly appears that genes play a role in the development of MS but there is a variety of other factors that are involved.
New treatments should be studied in a rigorous manner before they can be used. Scientific methods are used to assess the benefits and watch carefully for any risks, most often in the form of a randomised controlled trial.
Some treatments may have been developed for another purpose, but expert knowledge, experience and scientific reports of successful use may mean that they can be sometimes used for problems occurring in MS. Doctors are trained in assessing evidence for the benefits and potential harms from treatments. Your neurologist or neurologists in MS clinics will have an extensive knowledge of the treatments used for the condition.
Sometimes new treatments are proposed without any clear scientific background, and without going through rigorous study by professionals with extensive experience in MS. Sometimes suggested new treatments are only based on anecdotes. Your neurologist will be able to evaluate the evidence behind any new treatment.
There is a lot of coverage of MS in the media and on the Internet. Please remember that stories may often relate only to an individual, or may be presented in order to stimulate interest in a subject. What is presented may not be widely applicable or may not give all sides of the argument.
Sometimes false hopes or concerns can be raised which may be shared by many people. In weighing up stories it may be useful to consider the extent of experience the source has in dealing with MS. For instance, a report from a scientific meeting about MS may well have a reliable background, but an anecdote may not.
There are some general sources of information that are more reliable, e.g. the MS Society or MS Trust websites (see "External links" below).
Members of the Multiple Sclerosis Team at UHB keep themselves very up-to-date with developments and research, and have a broad knowledge of MS-related issues. There are professional sources of information where developments and research are reliably assessed, with all sides of the argument considered. It is likely that neurologists or nurses specialising in MS will have been aware of any new treatment and research while in development.
Fatigue is a common symptom of MS. Up to 85% of people diagnosed will experience fatigue at some point. Many people who have it find that it affects much of what they have to do each day, and it can affect their mood.
If you have fatigue, talk it through with your nurse, occupational therapist or your physiotherapist. Any of these people will be able to provide you with advice or resources that could be helpful.
We run fatigue management courses at the Queen Elizabeth Hospital. They run twice a year, one afternoon a week for six weeks.Each week we discuss a different aspect of fatigue management. If you want to know any more about these courses, please ask your nurse, therapist or neurologist.
Up to 87% of people with MS will report bladder problems. These symptoms can affect your quality of life and lower your mood.
A lot of research has been undertaken into bladder symptoms in MS and how they are best managed, and there are now more treatment options than ever before.
If you do have bladder problems, don’t be too embarrassed to talk them through with your nurse. She is used to discussing sensitive issues like this, and will be very understanding. An MS nurse and a continence nurse run a joint MS continence clinic at the Queen Elizabeth Hospital.
You can hire manual wheelchairs on a short-term basis. Usually there will be a cost, and a deposit is required. You can hire wheelchairs from any of the following organisations.
British Red Cross
- Location: Selly Oak, Birmingham
- Telephone: 0121 472 2078
- Free hire on short-term basis + refundable deposit
Care and Mobility centres
- Location: Kings Heath, Birmingham
- Telephone: 0121 384 7831
- Hire is £7 per day + cash returnable deposit
- Location: Hall Green, Birmingham
- Telephone: 0121 777 8383
- Hire is £30 per week, £10 per weekend + returnable cash deposit
If you require a wheelchair on a more permanent basis, a healthcare professional who cares for you will need to make a request to the local wheelchair service. Staff there will send for you, then formally assess your needs.
In order to access equipment from the health services you need to be assessed by an appropriate healthcare provider. Your doctor or MS specialist nurse can arrange this assessment.
If you are requesting major adaptations, e.g. a level-access shower, you will need to be assessed by the Social Services occupational therapists. If you live in Birmingham you can self refer to this service on 0121 303 1234.
If you are looking to purchase equipment privately you can book yourself into the Assist Birmingham Centre on 0121 464 4942.
This is a free assessment service, staffed by qualified therapists, and you can try the equipment before you make the decision to purchase. The therapists will let you know where you can purchase the items from - they do not sell equipment.
There are some companies who sell equipment privately, including:
- Boots the Chemist
- Ways and means (telephone: 0845 606 0911)
If you live outside Birmingham, speak to your MS specialist nurse or your GP for the details for your local area.
You need to first of all consider if you are eligible to receive a blue badge. You may qualify if you:
- are receiving the higher rate of the Mobility Component of the Disability Living Allowance
- are receiving a War Pensioner's Mobility Supplement
- use a motor vehicle supplied by a Government health department
- are a registered blind person
- have severe disability in both upper limbs, regularly drive a motor vehicle but cannot turn the steering wheel by hand even if that wheel is fitted with a turning knob
- have a permanent and substantial disability which causes an inability to walk, or very considerable difficulty in walking
How to apply for a blue badge
Who to apply to for a blue badge parking permit will depend on where you live. Please note that this service is only available for councils in England.
If you live in Birmingham
Older People's Access Service (OPAS)
Birmingham, B42 2TY
Telephone: 0121 303 1234
If you live in Solihull
Solihull Metropolitan Borough Council
PO Box 15060
West Midlands, B37 9BL
Telephone: 0121 704 6000
For more information, please contact contact Solihull Connect.
Telephone: 0121 704 6000
If you live outside these area and want to find out more, please visit the Blue Badges Scheme website (see "External links" below) or phone the MS Society helpline on 0808 800 8000.
Despite research carried out so far, there is no specific diet proven to be of benefit. There are a variety of diets that are promoted in terms of managing or even improving MS, but the evidence to support these is either limited or non-existent.
Some people claim that food allergies are common in MS, but there has not been any research that upholds this theory. If a food allergy is suspected, your GP should be able to refer you to an NHS allergy clinic.
Diet though is crucial to overall health. Eating a well-balanced diet that provides an appropriate amount of nutrients is essential to provide all the nutrition needed to be as active and healthy as possible. This needs to include foods from the major food groups of:
- fruit and vegetables
- dairy products
If you are concerned about your dietary intake, your GP, consultant or MS specialist nurse can refer you to a local dietician who could advise you further.
A well-balanced diet should contain the full range of normal vitamins and minerals necessary for healthy living. Some supplements may be helpful, but taking large doses of supplements may lead to an overdose on some vitamins, which may be harmful.
If you feel you have a specific deficiency, ask your GP about this or request a referral to your local dietician.
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