MS is a devastating disease because it is so unpredictable. That is one of the major psychologic burdens we must bear--the total uncertainty of our future. The progress, severity and specific symptoms of the disease cannot be foreseen. You never know when attacks will occur, how long they will last, or how severe they will be. Our course will take its own manner of progression but we need to remain hopeful. Despite all this, many people who have MS manage to live busy, interesting, productive and happy lives.
Most people are diagnosed with MS between the ages of 20 and 40, but the unpredictable physical and emotional effects can last forever.
Elevation of body temperature by as little as 0.5 degrees C will noticeably reduce neurologic function in some patients.This is the result of slowed axonal conduction induced by heating, and the alternations disappear within hours of regaining normal body temperature Reduction in visual acuity,incoordination or weakness and sensory or bladder dysfunction can be affected.
With a chronic illness, the scope has to expand to include your psychological well-being, your relationships and support system, as well as the quality of activities that make up the rest of your life. Each area is important, they are interactive and each one needs attention.
On a more personal note, I was diagnosed in August 1989 when I was almost 36 years old. I worked at a bank, and my first symptoms was failing eyesight. I could not see the amounts on the checks. They did tests here at our hospital but ended sending me to a neurogolist in Nashville. This was one of the most scariest times in my life. Believing you might have a brain tumor or had suffered a stroke. I was put through 3 days of continuous tests and sent back home knowing nothing.
Four days and nights later, the Doctor called and confirmed MS. My symptoms at that time, mostly disappeared within 4 months and I was pretty much back to my old self. Everything was on the right side of my body(I am right handed) which was difficult for a time.
Life continued on. I started on Betesaron when it was approved but little by little, I kept getting a little bit worse but I had always said going into this, that I would not let this MS get me down. I had a bad attack in February of 1997 which caused me to completely have to give up my job. That was a most depressing time. I have worked since I was a Jr. in high school and I felt so helpless and useless. I also lost my insurance so had to go off Betasaron since we couldn't afford the $989.40 it cost per month. My great supporting family and a select group of friends helped me through that terrible depression.
I still miss work, but really enjoy being at home too. I tire very easily and the right side of my body is mostly "just there". I get around with a wheeled walker and I have a motorized scooter for use outside.
Of course, I would much rather not have MS but I have accepted it and I do make the most of the time I have left in this life.
March 1999
We had a bad ice storm and we were without electricity for 5 days. Don got the kerosene heater out & we cooked on a Coleman stove BUT it was bad for me. I got sick with a chest cold and congestion and it got me down again. I had to have steroid IV treatments for 5 days every 12 hours and then went through 2 weeks of physical and occuptional therpy to get myself back to "normal". I am still weak but getting stronger each day.
September 1999-QUESTION for everyone---What common human activity relaxes tense muscles,reduces blood pressure and heart rate; exercises the muscles of the face,diaphragm and abdomen;boosts the immune system;and causes the body to release pain-fighting hormones?
The answer:laughter.
Laughter also helps you get some emotional distance from a distressing situation and see humor in it.
June 2, 2000
I started on Avonex in February 2000. Avonex is Biogen's brand name for interferon beta-1a. Interferons are proteins produced by the body which fight viral infections and regulate the immune system. It's not known exactly how Avonex works in multiple sclerosis, but it is thought to regulate the body's immune response against myelin, the fatty insulation surrounding nerve fibers. The goal of Avonex therapy is to slow the natural progression of disability that occurs in relapsing MS. It is supposed to reduce exacerbations and slow the permanent disability caused by MS. Avonex is an injectible drug. It comes as a powder-you have to add sterile water to it and draw it up in a syringe. I give myself a shot each Friday and I have had no reactions to the drug.
I saw this in my Living with MS magazine & thought I would post some of what she said here. I can realte to all of it. The article was by Linda Irwin who lives in Davison, MI.
February 1, 2004
I had no relapses in 2003. I continue to take Avonex & mega doses of vitamins. I really feel this helps to fight off the colds as I didn't have one the whole year. I am continuing with my healthy eating & I purchased a stationery bike in August & have been faithfully riding that 3+ times a week. I am still driving and still use my wheeled walker but I feel good. I may be slow in getting around but at least I am still getting there. Don't give up or into your MS. Fight it every day. Change your attitude. Remember to laugh alot!! May 2004 bring you peace within yourself.
October 22, 2005
Again, I had no relapses in 2004. I get my flu shot and continue with my Avonex and vitamins. I have cut out all refined grains and read the labels for that first ingredient to be whole wheat, I have started drinking soy milk (vanilla), and eat mega fruits and vegetables. I am still driving, helping Don at his office a few hours each day which gets me out of the house and exercises my brain. I even flew to Tampa, FL Aug '05 by MYSELF for 6 days and had a blast. Just continue to fight this and go forward. Learning to live with MS over the long haul is a slow process. It takes time to understand your MS and discover what will help you live with it year after year. Don't give into it and make the most of what you can do. You might surprise yourself like I did and take a trip yourself.
August 12, 2007
I'm sitting here at the computer with a fracture boot on my foot. Yes, I fell while trying to exercise on July 2nd and broke my ankle. I have been in a wheelchair until 2 days ago when the Dr told me I could start using my walker again but put no weight on my foot. Duh--ever tried to walk on one foot?
I have continued to feel good and have had no relapses. I still take my Avonex shot once a week and continue my vitamins. I do need to lose some weight as I have gained back some of what I lost due to stress eating. I went on a cruise--my first--in March with 9 other family members. It was wonderful. We went to Belize, Cozomel, Grand Caymens and Costa Maya leaving on a Sunday and returning on a Sunday. We did have to drive to Tampa, FL but it was well worth the long drive. One of the best part was getting to spend time with my sisters, nephews and niece who I am never around much except for holidays. I go back to the Dr on Sept 4th and I'm hoping I will be healed. This sure has been a bum summer for sure!!
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