“My brain is on fire, I am freezing” – those are the words Selma Blair used to describe the “heavy price” she’s paid for attempting to have a social life while living with multiple sclerosis (MS).
On Monday, the actor posted a photo on Instagram of herself in bed with a teddy bear, because the neurological condition had taken such a toll on her body. “People write to me asking how I do it,” she wrote. “I do my best. But I choke with the pain of what I have lost and what I dare hope for, and how challenging it is to walk around.”
Blair, 46, said she struggles to sleep at night, meaning in the daytime she can barely stay awake – this is one of a long string of symptoms related to the condition.
What Is Multiple Sclerosis (MS)?
MS affects the nerves in the brain and spinal cord. It’s believed to be an autoimmune disease, where the immune system mistakenly attacks the body. The outer casing that protects the nerves (myelin) is mistaken as a foreign body and attacked – think of it as a mouse chewing on electrical wiring.
‘Multiple’ refers to the fact the attack can happen in more than one place, and ‘sclerosis’ is the scarring or hardening of small patches of tissue, which interrupts the messages sent from the brain to other parts of the body.
[Read More: Life with multiple sclerosis is unpredictable]
MS affects roughly 100,000 people in the UK and is nearly three times more common in women than men. Most people are diagnosed in their 20s and 30s, however they can be diagnosed earlier or later than this.
The nature of the condition can be unpredictable and vary from person to person, as Jo Cole, who lives with the condition, explained in a HuffPost UK blog: “What if every morning when you woke up you didn’t know how your body would behave? Which bits would work? Which bits you could trust? This is how life with multiple sclerosis (MS) can be.”
Multiple Sclerosis Symptoms
According to the Multiple Sclerosis Trust, the most common symptoms are fatigue (overwhelming exhaustion), stumbling, unusual feelings in the skin such as numbness or tingling, slowed thinking and vision problems.
The NHS lists additional symptoms including: muscle spasms, stiffness and weakness, pain, problems with learning, depression and anxiety, sexual problems, bladder problems, bowel problems, and swallowing difficulties.
Some symptoms will develop and worsen over time, while for others they’ll come and go.
Diagnosis of MS
MS is difficult to diagnose, as doctors have to rule out other health conditions before a final diagnosis – this means you might have to undergo numerous tests. The MS Trust says it’s sometimes a question of waiting to see how symptoms develop, as this can help distinguish MS from other conditions.
If you are diagnosed, your neurologist might mention three types of MS: relapsing remitting MS, primary progressive MS or secondary progressive MS.
Relapsing remitting MS refers to people who have distinct attacks of symptoms that fade away either partially or completely. Primary progressive MS means symptoms gradually worsen over time, rather than appearing as sudden attacks.
Secondary progressive MS is a stage which comes after relapsing remitting MS. With this type, relapses are rare and symptoms gradually worsen over time without obvious attacks. Half of people with relapsing remitting MS will develop secondary progressive MS within 15-20 years after diagnosis.
Treatment For MS
Unfortunately there’s no cure for MS, but there are ways to manage the condition. Treatment will often depend on the type of MS a person has – if they have relapses of MS symptoms, they may be treated with steroid medication (either given as tablets at home or injections in hospital).
People will also be offered treatment to tackle the individual symptoms they’re experiencing. For example, people with fatigue may be prescribed amantadine (a drug typically given to ease symptoms of Parkinson’s), while muscle spasms can be treated with physiotherapy. Find out more on individual treatment options here.
If you have relapsing remitting MS, disease-modifying therapies (DMTs) aim to reduce the number and severity of relapses by reducing the amount of damage to the layer which surrounds a person’s nerves. According to the MS Society, there’s now one disease-modifying therapy that can help people with primary progressive MS.
For information and support, head to the Multiple Sclerosis Trust’s website.