talkms

A patient journey for MS

 

Multiple Sclerosis is an autoimmune disease in which the protective layer of fatty protein that covers the central nervous system cells gets attached by the immune system.

When that happens, the protective sheath becomes damaged (called demyelination). That stops the brain from effectively communicating with the body.

The term ‘sclerosis’ comes from the Greek, meaning scaring. Demyelination can cause scaring or lesions in different places within the central nervous system and the symptoms that arise from it vary according to the site and severity of the scarring.

Around 130,000 people are thought to currently live with MS in the UK, with 7,000 patients being diagnosed a year. Diagnosis tends to happen when people are in their 20s and 30s and the disease roughly affects three times as many women as men.

Types of MS

There are three main types of MS:

Relapsing remitting MS (RRMS)

More than 80% of people with MS are diagnosed with RRMS - meaning that they’ll experience episodes of new or worsening symptoms (relapses). These periods can last from days to months before symptoms gradually start to improve and relapses can occur without warning - although they are sometimes associated with periods of stress or illness. Remission (the periods of health in between relapses) can last for years at a time.

Around half of those with RRMS go on to develop secondary progressive MS within 15-20. years.

Secondary progressive MS (SPMS)

With SPMS, you no longer have relapses - your symptoms just get gradually worse. Thanks to the medications now available to patients, fewer people are likely to go onto develop SPMS and for those who do, the process may take longer.

In order to be diagnosed, your GP will look for signs that your MS has been gradually getting more disabling for six months.

Primary progressive MS (PPMS)

Only around 10-15% of people with MS are diagnosed with PPMS. Again, symptoms get worse over time rather than during sudden relapses. However, there many be long periods of time when long-term symptoms seem to be stable.

This kind of MS tends to kick in when people are in their 40s and 50s and diagnosis can be hard or delayed because by this time, patients may already be living with other conditions that can cause mobility and walking difficulties.

Progressive relapsing MS (PRMS)

This is a very rare form of MS that affects 5% of MS patients. It’s characterised by a steadily worsening disease state from the start, with acute relapses but no remissions.

Common early symptoms of MS can include:

  • fatigue
  • vision issues
  • stiffness or spasms
  • reduced coordination
  • balance issues
  • numbness
  • tremors
  • pins and needles
  • unexplained pain
  • bowel and/or bladder trouble
  • memory and thinking difficulties

What to expect when you visit your GP

Only a neurologist can diagnose MS so when you go to your GP to report your symptoms, they’ll need to refer you to a specialist.

Once you notice that you’re experiencing symptoms, keep a diary of them. Note the severity and frequency and then take the diary along to your appointment. It’s also a good idea to take someone with you so that you feel supported and empowered enough to demand further investigation is made.

Tests for MS can include blood tests, MRIs and a lumbar puncture. It may take months to receive a diagnosis as health teams often need to explore various causes for your symptoms and that can involve having a series of different tests.

When you see the neurologist for the first time, they’ll ask you lots of questions about your health problems and symptoms - both now and in the past. So again, that diary will really come in handy! They’ll also examine you for weakness in your coordination, eye movements, balance, sensation, speech or reflexes. Even if they suspect you have MS at that stage, they won’t give you a diagnosis until other tests confirm it.

Treating MS

There’s so much support out there for people with MS.

For those with RRMS, disease modifying therapies (DMT) can reduce the number and severity of relapses as well as slowing down how fast your MS gets worse. The drug ocrelizumab is also thought to help some patients with early PPMS.

But MS treatment isn’t just about taking medication. Lots of lifestyle interventions people to maintain a high quality of life. MS therapy centres offer non-drug therapies like hyperbaric oxygen therapy (breathing pure oxygen for repairing damaged tissue), reflexology, pilates sessions and more. These centres are also one of the biggest providers of preventive physiotherapy for people with MS.

Continence clinics can help with bladder and bowel symptoms by providing exercises for improving bowel and bladder control. They may also provide medications and products. Physical and speech therapy is also out there to build strength back up, while neuro-physiotherapists are trained to manage mobility and activity in people with nerve damage.

There’s no cure for MS but it is possible to get the condition under control.

There are lots of free helplines, online communities and local support groups out there to make your MS journey infinitely easier and less lonely.

 

Check out the MS Society for local services and join up to Shift.ms to be part of a huge online community complete with a ‘MS buddy’ service.