Information for Newcomers

How to live with an incurable disease

Here is some information that newly diagnosed MS patients can use to better understand what is happening to them. Because everyone knows that Multiple Sclerosis can be a debilitating and crippling disease, MS'ers tend to start living in a "what if" mindset and they find they are continually frightened and angry with the unfairness of life. What will I do if this happens or if that happens. But if those same patients learn to live in a "what is" World they can cope with this disease much better and live long, satisfying and productive lives.

    We must all come to realize that MS presents itself in many ways. Not everyone is going to end up in wheelchairs. In fact most patients will not! Most people will be diagnosed with Relapsing/Remitting Multiple Sclerosis. R/R MS means that a patient will wake up some morning with a physical problem. Something about his body just simply is not working right. That is a Relapse or an MS exacerbation or sometimes called an attack. Generally that symptom will last from a few hours to several weeks and then the patient will return to normal or almost normal. And in most cases they return to normal with or without any medical treatment.

    The second basic category of MS is Chronic Progressive or Primary Progressive Multiple Sclerosis. In this type of MS a patient does not remit once he/she has relapsed. The symptom becomes a permanent problem and almost never reverses itself.

    Here is a list of symptoms that have been reported by MS'ers around the world. This list is in no particular order and I am not implying that any particular patient will or might ever experience any individual symptom. These are general possibilities of MS symptoms that might at any time or might never afflict any individual MS'er.
Heat Sensitivity - Hot weather seems to drain the strength of MS'ers
Fatigue - The most universal MS symptom is deep, bone weary fatigue
Weakness in legs - Many MS patients complain of weakness in their legs
Trouble Walking - Stumbling and tripping on smooth surfaces for no reason
Numb Legs - General loss of feeling in the legs
Tingling Legs - A tingling sensation in the leg muscles
Balance Disturbance - A generalized feeling that you're walking a tight rope
Walk With Assistance - Cannot ambulate without braces, canes, walker, etc
Use Wheelchair - Unable to ambulate at all
Weakness in one arm/leg - use of one side of your body curtailed
Arms/hands "Go to sleep" - Wake up with an extremity "asleep"
Hypersensitive skin - It feels like bugs are crawling on your skin
Over Active Reflexes - Spasticity of legs or arms
Pain in or behind eye - Painful enough to blur vision and bring tears
Blurred Vision - Sudden inability to focus
Double Vision - Two identical images side by side
Change in color perception - melding of colors
Rapid eye movement - eyeballs "jitter bugging" loss of focus
Vertigo - Swimmy headed feeling of unreality
Facial Pain - Tic De La Rue or TMJ
Facial Numbness - Numb feeling unable to control expressions
Slurring Speech - Unable to form some word sounds, like a drunk
Spastic dysphagia - gagging, choking when lying flat on your back
Urinary Infections - Chronic infections of the urinary track
Urinary Incontinence - Unable to control bladder function
Bowel Incontinence - Unable to control bowel function
Mood Swings - From elation to depression
Female loss of sexual function - Loss of feeling except pain
Male Erectile Dysfunction - Inability to perform sexually
"Dead" feeling in extremities - Not exactly numb, just as if not there
Night Sweats - Waking up to clamy, damp, sheets
Digestive problems - Feeling too full, bloated after eating
Loss of hearing - Slow loss of audio range perception
Loss of Vision - A blurry, fuzzy visual field unable to focus
Constipation - An inability to move your bowels without assistance
Cognitive Dysfunction - A loss of short term memory and reasoning
Abdominal Banding pain - Unexplained pain in bands around your body

     If you start worrying that you might get this or that symptom and that such a problem will change your way of life you can drive yourself nuts. Don't live in a "What if" World. Understand that any symptom might happen to you but that in reality very few symptoms will ever actually affect you during your lifetime and that those that do will not last for very long. So, learn to live in a "What is" World. Today, yesterday, last week and last month you had no symptoms. That is "what is". No symptoms, don't borrow trouble with "but what if".
    OK, we know that you are going to have a symptom sooner or later. So pick one and see how it would impact you. The most universal MS symptom is fatigue. So lets pretend you are hit with fatigue. I have known MS patients who just gave up and said, "I can't do anything because I'm so fatigued." First of all, there are a lot of ways to help your body overcome fatigue.
    You can arrange your day to get an hour off in the afternoon and take a nap. You can also change your eating habits to do away with those heavy meat, potatoes and gravy meals that cause you to feel more tired as your system struggles to digest all that stuff. Then there is exercise. The best way to overcome fatigue is to physically increase your heart rate and oxygen uptake. Then of course you can use food supplements like some extra vitamin B-12 for quick energy or Co-Enzyme NADH for fatigue relief and something like Prometol to increase your long term stamina so you don't run out of gas at three O'clock in the afternoon.
    Even if you do get hit with a symptom a little calm, quiet reflection will help you see ways of reducing its effects and shortning the time you are affected by it. If you live your life in a "What is" mode you can deal very successfully with the ups and downs of Relapsing/Remitting Multiple Sclerosis.
    The bottom line here is: Yes you have an incurable disease. No, it is not the end of your life as you know it. Yes it is going to make living unpredictable and many times unpleasant. However, with a lot of careful planning and a great deal of personal discipline you can live a full, satisfying and very productive life.