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Receiving a diagnosis of Multiple Sclerosis (MS) can be a challenging experience, particularly when it comes to sharing this news with friends, family, and children. Common misconceptions about MS—such as the belief that it will quickly lead to wheelchair use—can make it difficult to discuss your condition openly.
It is important to inform your nearest and dearest, whether it's your mother, spouse, or best friend, about your MS diagnosis. Early communication helps them understand the condition better. Resources from organisations such as the MS Society, MS Trust, and MSUK provide valuable information that can assist in explaining MS to your loved ones.
After a diagnosis of MS, you will be under the care of a neurologist at your hospital. According to NICE guidelines, you should be reviewed at least once a year. However, MS is highly individual, and the frequency of reviews may vary based on your specific symptoms and how you are managing them.
If you are on disease-modifying therapies, you are likely to be reviewed every six months. For significant symptom flare-ups, it is advisable to contact your local MS nurse for a consultation or to discuss symptoms over the phone. The care for MS patients is managed by a multidisciplinary team, which includes:
The MS nurse often acts as a sign-posting resource. They may refer you to other specialists, such as:
Long-term management of MS is highly individualised and requires a partnership between the nurse and the patient. It is crucial to contact the MS nurse if you experience changes in your condition that might require adjustments in your management plan.
The general public often suffers from misconceptions about MS, much like the ignorance I experienced upon my diagnosis. Media portrayals, such as those seen in soap operas, frequently depict either exaggerated symptoms or an unrealistic lack of symptoms. These representations do not accurately reflect the true nature of MS and can contribute to misunderstandings.
