Multiple Sclerosis - and what it means to me


Multiple Sclerosis

This is a brief guide to the neurological disease called Multiple Sclerosis. I have slanted with a personalized angle to my own affliction to give it a human face rather than as abstract medical explanation.  It is a complex and debilitating disease that still so little is known about its causes, to some degree its effects, possible outcomes and possible cures. (of  which none proven scientifically exist). One must always remember with this disease it can go into periods of remission for years or even decades. Therefore to scientifically prove that it is "cured" is in fact very difficulty.

What is MS ?
 Multiple Sclerosis  known as MS  (multiple = many + sclerosis  = lesions)  is a disease of the body's central nervous system,  in layman's terms that is the brain and spinal cord.   The "white matter" tissue is made up of nerve fibres which are used for transmitting  signals  within the nervous system of the body. MS is the most common neurological disease today in the West. Rates of MS do varying wildly worldwide between ethnic origin and demographic location. Hot spots tend to be in the cooler climates of the Higher latitudes particularly the British Isles and Scandinavia, Canada, Tasmania and NZ in the South.

People whom  are affected by MS,  develop areas of damage called plaques or lesions appearing  in seemingly random areas in this white matter of the Nervous system.  A lesion occurs  when the protective coating of the nerve called the myelin, is destroyed for a reason as yet really unknown. I liken this removal of this fatty substance Myelin to removing the plastic insulating coat of a electrical wire. The result of this is the same - the electricity or in this case nerve signal short circuits sending absent , wrong or poorly communicated messages. The result of this  is that  people with MS can often suffer loss or altered  function / sensation in those parts of the body where nerve transmissions that are communicated through the body from the spine and brain.


The actual process of demyelination of the nerve

Multiple Sclerosis is a very unpredictable and variable disease that  still has medical science baffled to its actual cause and is often termed "The Mystery Illness". It is also in simplistic terms a disease where the body's own immune system (for reasons completely understood at present) will attack the myelin sheath coating of nerves in an auto-immune reaction as if it was an invading virus.  As there is still so little known about this disease, there are some schools of thought that believe that MS is in fact an umbrella for several diseases very closely related with different rates of progression and resulting disabilities and outcomes.

Depending on what part of the body's Nervous system is attacked and how severely , the type of symptoms and outcomes are extremely variable. This can be further complicated by existing neurological damage in the surrounding area and the general state of progression of the disease.  Due to this extraordinary variation of the disease's  presentation in each individual,  charting a prognosis and generalizing on an eventual outcome becomes extremely difficult. Because of this chaotic way MS attacks the body in its location intensity and timing,  no two cases are ever the same. For example depending on where in the Nervous system MS attacks the symptoms can be as varied in location and severity as complete paralysis of the leg to a tingling of the tongue or diminished sight.
 



The distinctive tell-tale "white spots" - or Lesions on a Brain MRI scan


So how does MS effect you?

This in fact is a very moot question and very hard to answer.  As the central nervous system is just that, CENTRAL to the functioning of the body it can be wide and varied. A simple analogy for MS is to liken it to a car with a faulty "wiring loom" So depending on what place in the car there has been a breakdown in the wiring system will determine the severity and location of the fault. Will it be just the windscreen wipers working intermittently or failure of all the lights. There however frequently seems to be not a direct correlation between  the severity and size of the lesion , to the its resultant outcome in the body. Some lesions depending on exact location can be almost benign in the symptoms. So often people can have had MS in this benign form without almost noticing it.


2 MRIs of same brain section 

             1. Showing brain slice with all lesions
             2. Contrast showing Active Lesions as emphasised by injection of patient with dye

There is no doubt that MS is what is termed a Chronic Neurological illness. MS is something that will "spot" itself through the central nervous system rather than blanket cover it,  very rarely do those effected loose or have altered function in all areas. It is also true to say that generally speaking MS is not a fatal disease,  though its can for many destroy their quality of life. Some people can end up being severely handicapped with MS with extreme paraplegia, or blindness or loss of sensation or movement, with  others it may be only a severe and uncomfortable inconvenience.
 
 


 Spinal Lesion close to the brain stem 
on a MRI scan similar to my own

It is true to say that MS is a painful disease and often very unpleasant as it can effect both sensations and mobility. The list of symptoms a suffer of MS can endure can look truly daunting on paper (let alone in reality to the suffer!) Yet again it is infrequent that these conditions are life threatening.  Symptoms fall into 2 basic categories  SENSORY and MOTOR. 
 

My Symptoms: How do they effect Me?

So far I have not had motor troubles, that is the ability for my body to move in a desired fashion usually caused by muscular problems. My problems have been so far mostly sensory in nature, that is altered , diminished or the absence of sensations. This seemingly dramatic following  list of symptoms are those that I  continue  to endure in some form, and true to the very nature of MS they  ebb and flood quite erratically. With MS the most dramatic manifestation that often occurs is severe problems with the legs, walking and gate rendering many wheelchair bound , o. MS is often something you cant see, as its internal in sensations. A mistake that many make with MS patients is to say "how well the look" when inside the can feel like hell! My nickname for it in this way is the "Hollywood Disease" you can to the outsider appear very fit and well but internally it can be a very different story in your ability to live any semblance of a "normal life". This can be a very isolating factor for the person with MS as it can be viewed be the misinformed that you are psychosomatic or just lazy or not motivated.
 
 


The Face of MS - me! - Rhuari -  4 months after 2 major MS attacks Oct 2003

My list of  Symptoms:

- chronic disabling fatigue
- numbness, tingling, pins and needles , burning sensations, "crawling spiders"
- severe stinging
- heat intolerance
- urinary urgency or hesitancy and continence
- bowel spasms, pain ,constipation and frequency
- aggravated gastric reflux
- "wrestless legs"
- spastically
- cramps
- vertigo and balance problems
- nausea
- blurred and painful vision
- tear ducts that don't work
- slurred speech
- short term memory loss
- lack of concentration
- altered sleep patterns
- tinitus and ear pain
- saliva glands that over work
- dizziness
- facial neuralgia (extreme pain in face/eyes/ teeth)
- cognitive function (that may be more obvious to others than me!!  :-) 

As you will note,  many of the symptoms are not specific to MS,  but  also applicable to a great many other medical conditions. What makes them special is in the way that they present and manifest themselves,  that makes it abundantly clear that it is the MS that is causing them.  There is in my case,  a good correlation between the positioning of MS lesions and symptoms, however this is not always the case.  For example the Spinal Lesion i have at C2 on the brain stem is the home of certain nerves that for example would  explain my Ear problems, Facial neuralgia, bladder troubles, numbness in shoulder arm etc, or the Optic lesions causing eye pain and diminished vision. Sometimes these symptoms are annoying or uncomfortable but unfortunately they are often also extremely painful. Neurological pain is something hard to treat and the better drugs are often prohibitively expensive or cause great fatigue already a great problem with MS.
 
 


Optic Neuritis 
lesion on conical optic nerve, the  biggest nerve in the body   - magenta arrow
brain lesion - blue arrow

Generally I go through periods of "relapse" this is when the new neurological pathways that have developed since my last attack of demylenation, start to become more dysfunctional. This "breakdown in communication"  in nerve transmission is when  wrong or no signals are sent to the part of the body they are required. More often than not,  a range of symptoms will start and drift in an out in tandem or sequentially over a period. Usually this tends to be when I hit a period of great fatigue. The symptoms, for example muscle spasms or spastic movement in my legs, or severe pain in eyes may last seconds, minutes or days. In one's life this leads to a great amount of chaos and can lead to a great deal of unpredictability and uncertainty. It is important with MS to build up a resilience to this changeability in ones life, and an entirely new flexible position must be taken to all activities to allow for this. My own spontaneous, adaptable and pragmatic nature has given me great skill in dealing with the effect of MS in being able to minimize its frustration and impact on my life and happiness and enabling me to make the very most of my good periods.

The Course of MS and Diagnosis

There are now 3 recognized paths of progression with Multiple Sclerosis. (see the chart below). MS is a disease that is often very poorly diagnosed, with many suffering  for many years or decades without a firm confirmation they have the disease.  Sadly MS is not a disease like Diabetes of Hepatitis, as there is no "definitive test" that will prove that you have it. (or for that matter that you have been "cured" ).  MS over the years has usually had a "criteria" that must be met to confirm a diagnosis. At present this is known as the "McDonald Criteria, as I was diagnosed under. I liken that to be being told its "A Big Mac, With a Large Fries and Medium Coke with Apple Pie". result = McHappy Meal or MS!..... In my case my diagnosis was confirmed by having Multiple ( in my case 3 lesions on spinal and 2 brain confirmed), Optic Neuritis, a "history of medical conditions consistent with MS" and a positive test on my Spinal Tap where certain proteins are found to be present (that indicate demyelination. = my McSad Meal  ....MS!
 
 


This Diagram Charts the 3 possible courses of MS 
Time Vs Neurological Deficit/Disabilty

Sadly as MS is one of those diseases that comes and goes randomly and with 3 different form of progression and its very individual nature it presents in each human being it is in fact quite difficulty to tell which path your are on. The determining factor in labelling which form of progression you have is in fact you history over time. Initially almost every once diagnosed with said to Relapsing and Remitting MS. It can take up to 10 year after diagnosis to truly know which form of MS you have. 
 

Treatments and Medications in MS

This section is underconstruction and well be completed shortly 

Rhuari Hannan
 



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