What is this thing called MS ?

What is this thing called MS ? A short MS 101 !

Multiple sclerosis (MS) is a chronic, progressive autoimmune condition that affects the central nervous system.

MS occurs when the immune system attacks the myelin that protects the nerve fibres in the spinal cord and brain. This is known as demyelination, and it causes communication difficulty between the nerves and the brain. Eventually it can result in damage to the nerves.

Practically this means that despite me saying in my head “Grab that mug” the hand says …well “Speak to the hand” and drops it!

It’s particularly bad when it comes to doing intricate things like screwing in screws or anything where motor response is needed. Sometimes eating can be an artistic expression…Chopsticks and Sushi…forget it. Similarly, with walking, brain says lift foot …foot says Meh!

The result is a stumble…and repeat.

Tuck and roll…tuck and roll ( Fortunately I played rugby so it is a bit of nostalgia- also military training when jumping from a moving vehicle …MS training before I knew I needed it!)

The cause of multiple sclerosis is currently unknown. It’s thought that genetic and environmental factors can play a role. Having worked with chemicals my whole life…I’m not that surprised.

There’s currently no cure for MS, though there are treatments that can reduce symptoms. Typically though once (IF)you are diagnosed the first thought is to dose you full of corticosteroids…Prednisone infusions the preferred poison.

This doesn’t “Fix” anything but theoretically it does make you feel better more quickly thereby giving your body a chance to recover sooner than without. It also has the effect of holding on to water and lets you swell for months to come.

 I’m no fan.

Multiple sclerosis can be difficult to diagnosis; there is no single test that can diagnose it. Instead, a diagnosis typically requires multiple tests to rule out other conditions with similar symptoms.

There is a schedule where the assessment is made with the known observations “complaints”, MRI and finally a spinal tap to check that the spinal fluid is ok. Of all the spinal tap is probably the most confrontational, the waiver against any paralysis as a result…understandably it a stressful experience!

The best advice I can share is to be aware of the symptoms, Awareness is absolutely the BEST insight to have if anyone you know shows any of the “generic” symptoms. Better to be aware and wrong than uninformed and ignorant.

I was both uninformed and ignorant and it cost me 7 years. Not to say things would be any different, I am at peace with my journey and everything is as it needs to be. However a lot can happen in 7 years.

Symptoms of MS vary widely, but some common symptoms include

 Numbness or tingling of the face, body or extremities as if you have sat on one spot too long and cut off blood flow, unexplained weakness or paralysis. For me it began with prickling in my toes which slowly spread to my hands. Tingling sensations and numbness are one of the most common warning signs of MS. Common sites of numbness include the face, arms, legs, and fingers.

Impaired coordination or problems with gait especially if there is no reason (like a party or a bottle of wine!)

 Vision problems, specifically the dreaded double vision, partial vision or even loss of vision. You may not notice the vision problems immediately, as degeneration of clear vision can be slow. Pain when you look up or to one side also can accompany vision loss. Inflammation affects the optic nerve and disrupts central vision.

Muscular pain similar to if you have a really bad case of the flu (without the runny nose). Weakness in the arm and leg muscles may occur, and this can sometimes affect balance and posture, causing clumsiness or lack of coordination. You might experience stiff muscles or joints as well as uncontrollable, painful jerking movements of the extremities. The legs are most often affected, but back pain is also common. I had a few weekends where I literally didn’t move (couldn’t move), it wasn’t the squash! The sports physio just made me work harder!

Fatigue but so severe that you don’t feel like doing anything – again without a fever or runny nose. Unexplained fatigue and weakness affect about 80 percent of people in the early stages of MS. Chronic fatigue occurs when nerves deteriorate in the spinal column. Usually, the fatigue appears suddenly and lasts for weeks before improving. The weakness is most noticeable in the legs at first. I think this is what has affected me the worst as my mobility really took a brutal knock

Dizziness, vertigo or feeling not in control of your ligaments

Heat intolerance, for me I suddenly discovered that if I took a hot shower or bath I would immediately be faint and uncoordinated, in fact I passed out on a few occasions. The worst is finding yourself trapped in the bath (And, Yes it has happened to me!)

The only solution is to run cold water in and wait to regain control. I won’t be doing that again anytime soon. That is one of the reasons my house is at 11-12 degrees right through winter…

Most people who suffer from MS have a relapsing-remitting course.  The onset of new symptoms may develop over a few days or weeks and then improve partially or completely. The Relapse remitting part is a misnomer as you never, NEVER get back what you lose. If you are fortunate what you have left stays around for a while before the next drop. It’s a confrontational infliction that robs you of mobility and dexterity faster than you think. For me …from Squash to walking ring in 4 years…

As a consequence of the infection/inflammation of the brain several “new” symptoms can be present. The stresses of MS can also cause irritability, mood swings, and a condition called pseudobulbar (emotional incontinence) affect. I find myself tearful at the sight of dead hedgehogs or badgers along the road and even watching sad movies can get me going. Scientists believe that pseudobulbar affect may result from damage to the prefrontal cortex, the area of your brain that helps control emotions. There is very little you can do about it.

Major depression is common among people with MS.

Coping with MS symptoms, along with relationship or family issues, can make depression and other emotional disorders even more challenging.

Published by Daniel Taylor

MS Warrior with an affinity for 80's New Wave music and deep philosophical ramblings...and coffee , definitely coffee

One thought on “What is this thing called MS ?

  1. Thanks for sharing Daniel, to be honest I find it hard to know what to say other than to tell you that I really do admire and respect the way you somehow manage to cope with MS. I seriously doubt that I would be able to do the same. Look forward to reading the next Saturday edition!


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