About MS

 

What is Multiple Sclerosis?: Multiple Sclerosis (MS) is a neurological disease, which means it affects your nerves. A substance called myelin wraps around your nerves to protect them. MS is the breakdown of myelin as your body attacks itself. The word “sclerosis” refers to the scar tissue or the lesions that appear as the myelin is damaged. The unprotected nerves can’t function as they would with normal, healthy myelin. The damaged nerves produce a wide range of symptoms that vary in severity.

 

MS: A Chronic Condition: Multiple Sclerosis is a chronic condition, because there is not yet a cure for the disease. It’s important to know that for the vast majority of people who have MS, the disease is not fatal. Most of the two or more million people worldwide and a hundred thousand or so in the UK, with MS have a normal life expectancy. A rare few may have complications so severe that their life is shortened. MS symptoms can be managed and controlled with medications and lifestyle adjustments. (Goth E., 2014)

 

In 1996, the National Multiple Sclerosis Society (NMSS) surveyed a group of scientists who specialise in MS patient care and research. After analysing the scientist’s responses, the organisation categorized the condition in 4 primary types:

 

• Relapse-Remitting

• Primary-Progressive

• Secondary-Progressive

• Progressive-Relapsing

 

The categories’ classifications are based on how far the disease has progressed in each patient.The most common type is relapse-remitting MS. This form affects around 85-90% of people who have MS.

 

Progressive Types of MS: Around 10-15% have one of the 3 progressive forms of the disease: primary progressive, secondary progressive or progressive relapsing. Each of these 3 types indicates that the disease continues to worsen without improvement. Without treatment about 50% of patients who begin with a diagnosis of relapsing-remitting MS will advance to secondary-progressive within a decade of their diagnosis.

 

Relapse-Remitting MS: When you have relapse-remitting MS, the most common form of the disease, you may experience:

 

• Clearly defined relapses or flare ups that result in episodes of intensive worsening of neurologic function.

• Partial or complete remissions or recovery periods after the relapses and between attacks when the disease stops progressing.

• Mild to severe symptoms, and relapses and remissions that last for days or months.

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Primary Progressive MS: this form of MS progresses slowly yet steadily from the time of its onset. Symptoms stay at the same level of intensity without decreasing and there are no remission periods. In essence, patients with primary-progressive MS experience a fairly continuous worsening of their condition. However, there can be variations in the rate of progression over the course of the disease-as well as the possibility of minor improvements (usually temporarily), and occasional plateaus in symptom progression.

 

Secondary Progressive MS: Secondary Progressive MS is more of a mixed bag. Initially it may involve a period of relapse-remitting activity, with symptoms flare ups followed by recovery periods. Yet, the disability of MS doesn’t disappear between cycles. Instead, this period of fluctuation is followed by a steady worsening of the condition. People with secondary-progressive MS may experience minor remissions or plateaus in their symptoms, but this is not always the case.

 

Progressive Relapsing MS: In this relatively rare form of MS, people experience their condition as steadily worsening, yet also experiencing clear relapses in the form of acute flare ups. In some cases, there is no recovery from these flare ups, or though in other cases there is recovery. The difference between progressive relapsing MS and relapse remitting MS is that in the former type the periods between relapses involve continuing progression of the disease.

 

Type Casting: Early MS can be difficult for doctors to diagnose. As such, it can be helpful to understand the characteristics and symptoms of MS at the time of initial diagnosis-particularly since the vast majority of people with the disease exhibit characteristics of relapse remitting MS.

 

Although MS currently has no cure, it is not normally fatal. In fact, most people who have MS may never become severely disabled. Identifying MS early at the relapse remitting stage can help ensure prompt treatment to help slow the progression of the disease. (Madell R., 2014)

 

Symptoms Vary: The list of possible MS symptoms is long. It includes numbness and tingling, vision problems, balance and mobility issues, slurred speech as well as many others. There is no such thing as a “typical” symptom of MS because each person experiences the disease differently. The same type of symptoms may come and go frequently, or you may regain a lost function (bladder control, for example) after a period of time. The unpredictable pattern of symptoms has to do with which nerves your immune system attacks at any given time.

 

The Cognitive Side of MS: The damage done to the nerves by MS also affects your critical thinking and other cognitive skills. It is not uncommon for people with MS to suffer from problems with memory and finding the right words to express themselves. Lack of concentration and attention is also common. Problem solving skills and spatial relations can also be affected by the breakdown of myelin. Cognitive inadequacies can lead to frustration, depression and anger issues.

 

A Silent Disease: MS is labelled as a “silent disease” or “invisible disease.” Many people with MS look no different from a healthy person because some of the symptoms, such as blurred vision, sensory problems and chronic pain are not visible. Someone with MS may need accommodations even though they don’t have mobility issues and seem “FINE.” Multiple Sclerosis is also called a silent disease because even during remission the disease is still progressing. This is sometimes referred to as the “silent progression” of MS.

 

Stay Cool: People with MS are advised to stay cool whenever possible. Heat intolerance is a common condition and can often cause exacerbations of symptoms. You might experience a spike of symptoms from:

 

• Hot weather/ sun exposure

• Fever/ illness

• Hot baths or showers

• Overheating from exercise

 

Coping/ Outlook: Multiple Sclerosis is an unpredictable disease that acts differently in each person. The irregularity of symptoms can be enough to make MS a scary diagnosis. Arming yourself with a solid support system of medical professionals, friends and family can help you cope with this chronic illness. Appropriate treatments can minimise relapses and help you get the most out of each day. (Goth E., 2014)

 

What this means to me (beMSaware)

 

I was diagnosed in March 2012 with symptoms including loss of vision in left eye, loss of balance and coordination resulting in the use of two walking sticks for a period of about a month before my diagnosis. Having got my diagnosis I was put on a course of intravenous steroids for 3 days. After the first day, I started to see an improvement. After the second day, I was only using one walking stick and after about a week, my vision had come back to about 50% and I was no longer using walking sticks. This was my first confirmed relapse.

 

My second relapse was in June 2012. Having still not fully recovered from my first relapse and with vision in my left eye only at about 75-80%, I started to lose the vision in my right eye. After a course of oral steroids lasting 5 days, vision in my right eye was virtually back to normal whereas the vision in my left eye had no improvement.

 

I started taking Copaxone in June 2012 up until July 2013. This is a medication that you inject daily and it is meant to reduce MS symptoms and relapses. This is a first line treatment for MS.

 

My third relapse was in May 2013. This time I lost the use of both arms. This came about over a number of weeks having experienced varying degrees of pain in both arms until I was no longer able to use them with any real dexterity. After another 5 day course of oral steroids, I got the use of my arms back within a week or two and felt that I had made a full recovery within a month.

 

I started taking Gilenya (Fingolimod) in July 2013. This is an oral pill taken daily and is a second line treatment for people with more active MS.

 

My fourth relapse was in October 2013 whilst on holiday and the main symptom was the “MS hug” which is intense pain in your intercostal and stomach muscles. The pain spread from quite a small area from just below my ribs to encompass my left flank from under my armpit to my hip. This made sleeping, breathing, eating, and generally getting about extremely difficult. This also had an effect on mood and behaviour.

 

Summary

 

Since my diagnosis in March 2012, I have found it very difficult to cope and live with the symptoms and relapses that MS had presented me with. It is only since the end of January 2014 that I have had the energy, control and knowledge of the condition to recognize what I can and can’t do on a day to day basis. I rest when I need to rest (more often than not) and I train like a mad man when I can (not as often as I’d like). I still experience new and varying symptoms on a regular basis; the latest of these being a problem and acute pain in my right ankle and lower leg as well as numbness, tingling and occasional loss of function in my right arm. My vision still hasn’t made a full recovery from my 1st relapse back in 2012. It is about 80-90% on a good day and can drop to about 50-60% on a hot or bad day. As I hope you can imagine, this makes planning for anything very difficult and so I now just tend to live day to day making the most of the good days and trying not to fret too much about the bad days. Having seen the neurologist in April 2014, I am awaiting a new scan to see if I have had any new scarring or lesions form since my last scan in April 2013. Fingers crossed.

 

That is why time is of the essence in trying to raise funds for research to find a cure for MS as I don’t know how far away the next relapse is and how severe it may be. This is also the case for everybody suffering from MS. Thanks for taking the time to read. Please show your support by telling your friends and family about my challenges that I am doing to raise awareness and funds for research into an MS cure. Please donate if you can.

 

THE CURE IS OUT THERE!!

 

beMSaware

 

Reference List

 

Goth E. 7 Multiple Sclerosis Facts you Should know: Get the facts on MS. [online] Available at: -you-should-know#1 [Accessed April 16 2014].

 

Madell R. Types of Multiple Sclerosis. [online] Available at: [Accessed April 16 2014].