How Healthcare Professionals Support My: Multiple Sclerosis

“I thought it could be the beginning of Carpal Tunnel syndrome, however, a few weeks later, my feet had the same sensation which started to spread up my legs and cause mobility problems.”

In the first of a new series of articles, Amy Seggar talks to us about her journey with MS, the Healthcare Workers that support her and how she isn’t letting the condition stand in her way.

Topics covered in this article

My Story With MS

What Is MS?

What Are The First Signs Of MS?

How Is MS Treated?

The Job Roles That Support My MS

How Do These Job Roles Support Me?

The Outlook With MS

Job Roles Summary

My Story With MS

I was diagnosed with Multiple Sclerosis (MS), aged 23.

This came after a 7-year long journey, seeing a plethora of different Health Professionals, to find out what my symptoms were being caused by.

From being 16 years old, I had struggled through my A Levels and a University degree, all of which I did from home due to episodes of debilitating symptoms.

I visited multiple hospitals, numerous departments and was constantly discharged back to my GP when nothing could be found to explain my pains and sensations.

But in 2019, I saw a Consultant Neurologist who sent me for an MRI scan, that showed lesions on my brain and spine, suggesting I had Multiple Sclerosis. After a lumbar puncture, to confirm this diagnosis, I began seeing a team of Nurses and other Health Professionals to manage my symptoms and help me through understanding what MS meant for me.

With their help and support I now work from home, running a small business, and I am reaching the end of my Master's degree in linguistics.

What Is MS?

MS is a lifelong, incurable condition, affecting the nervous system, where the brain and/or spinal cord can be seen to have visible changes and damage on MRI scan images.

The damage to the nervous system disrupts the flow of information that passes from the brain to the body, and mobility, sensations and functions can all be affected.

It is one of the most common causes of disability in young adults, in the UK. The symptoms can range from mild to entirely debilitating.

What Are The First Signs Of MS?

The first signs of MS vary from person to person, because symptoms are dependent on which part of the brain or spinal cord is being affected at that time.

For me, the symptom that led to the diagnosis was a pins and needles sensation/numbness in my extremities.

This began with a tingling feeling and weakness in my right hand, which at first, I thought it could be the beginning of Carpal Tunnel syndrome, however, a few weeks later, my feet had the same sensation which started to spread up my legs and cause mobility problems.

These sensations, in my arms and legs, followed on from more vague, harder to diagnose, complaints such as extreme fatigue, occasional vision problems, bladder issues, and loss of balance which had all developed in my late teens.

How Is MS Treated?

Although MS is not curable, many treatment options are available, including lots aimed at reducing the occurrence of symptoms, and those that treat the symptoms themselves.

Patients with MS often have ‘flare ups,’ which are periods where their symptoms are exacerbated.

When I have these, I am treated with a high dose of steroids to reduce the inflammation in my nervous system.

This has been highly successful in my case, reducing the worst symptoms quickly.

Long term options are also available in the form of oral tablets, injections, and infusions.

These types of medications aim to reduce the number of relapses, or flare ups, patients have.

As has happened in my case, because of the many options, if one medication proves to be ineffective or produces too many side effects, patients can be moved onto an alternative form of treatment that suits them.

Alongside medication, there are complimentary therapies that help people cope better with everyday tasks and increase mobility.

The Job Roles That Support My MS

My Healthcare Professionals are a team of people that coordinate with each other to provide me with advice, tests, and treatment.

These people include a Consultant Neurologist, Physiotherapist, Occupational Therapist, Radiographer, Radiology Nurses and MS Nurses.

Many of these professionals are involved in an MDT (multidisciplinary team) meeting, where progress and treatment courses are discussed.

How Do These Job Roles Support Me?

My small team of MS Nurses are always the first port of call.

Whether it be to ask questions about the condition, discuss treatments, or report new symptoms, an MS Nurse takes the role of being the initial point of contact to liaise between patients and other professionals.

An MS Nurse discusses living with MS after a patient is first diagnosed, explaining what life may be like, the types of MS, and the treatments available. In my first conversation with an MS Nurse, I was told to call them if there was any change in my condition, any new symptoms developed, or I simply needed more support.

They also take on the role of debunking myths a patient may come across on the internet about newfound cures and treatments; providing a reliable source to call upon to ask questions if they are unsure about something they have read.

An MS Nurse can also arrange support from other Healthcare Professionals, who can give treatments such as additional therapies.

In addition, they liaise with Consultant Neurologists if there are any problems or a decision about treatment needs making.

My small team of MS Nurses stays the same, and I have a direct line to them 5 days a week.

The rapport this allows me to develop is extremely important in being comfortable discussing health issues and worries.

They are experts in their field, with the most up to date information in medicinal developments surrounding MS and their main role is to help people living with the condition, on a day-to-day basis.

My Consultant Neurologist is the highest-level professional that manages my condition and whilst I interact with him less than with my MS Nurses, he does remain a constant and consistent figure in my treatment.

The role here is to deal with my MS management, leading the decision on my treatment and discussing test results from my scans with me.

He is also responsible for keeping my GP up to date with my condition, meaning they are fully aware of everything happening with my hospital care team.

Physiotherapists and Occupational Therapists play a similar role to each other in relation to my treatment.

Both can be requested to help by either myself or my MS Nurses when I am recovering from a relapse or need more help with mobility and daily tasks.

A Physiotherapist is there to help with gaining strength and general mobility, offering exercises patients can continue by themselves at home.

Their focus is on rehabilitation and continuation of walking and building core muscles, to enable patients to move more effectively.

An Occupational Therapist supports patients with the completion and ease of everyday tasks.

They can do mobility and balance tests and suggest aids that help specific needs.

These include aids to balance and grip such as shower rails that can be used in the home to prevent falls and injury.

Radiographers and the rest of the imaging team take care of me when I am required to have scans.

These are usually MRIs, where the progression of MS can be seen by looking at detailed images of the head and spine.

A Radiographer is able to analyse and interpret these images and relay the result to my consultant.

A Radiology Nurse is present to assist the patient getting into the MRI scanner and potentially fit a cannula if a contrast agent is required.

These Healthcare Professionals are particularly good at keeping patients relaxed and calm throughout their experience, as scans can be daunting.

In the near future, Neurology Nurses will be taking over my main treatment, as I start intravenous infusions.

They will spend the entire day keeping track of my stats, fitting my cannula, and administering my infusion in a ward setting. They will therefore be added to the rest of the essential group of Medical Professionals that advise me, support me and treat my MS.

The Outlook With MS

The outlook is one of the toughest things to pinpoint because there are no definites.

The rate of progression of the disease varies hugely between patients and can be dependent upon age, the number of relapses someone has, what parts of the body are affected and how effective treatment is to an individual.

Many people with MS live a perfectly long and healthy life, with few relapses and effective medication preventing symptoms from becoming unmanageable. However, others lose their mobility entirely, and their MS progresses to a stage where their symptoms do not continue to have relapse and remission stages (Relapsing and Remitting MS), but instead increase in severity and become constant (Primary Progressive MS).

It is the role of all the aforementioned Healthcare Professionals to monitor the progression of patients’ MS, in order to try and maintain an effective treatment plan and offer additional therapies when needed.

Job Roles Summary

Consultant Neurologist

Physiotherapist

Occupational Therapist

Radiographer

Radiology Nurses

MS Nurses