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home : letters : letters August 21, 2017

3/17/2017 7:26:00 AM
Multiple Sclerosis Awareness Week/Month

To the Editor:

A lot of people, even those who have known me for many years, see me out in public (rarer these days) and have no idea that I have lived with M.S. for over 20 years. This last week was M.S. Awareness. In fact this month is. I would like to add some perspective of my own opinion and observations about M.S.

It is a disease of the central nervous system. For those of you who aren't aware what the CNS controls, that would be all of your bodily functions. Breathing, walking, swallowing, thinking, feeling(s), etc. Feeling(s) would be the numbness in an arm or leg, or the burning and tingling. Some times my "hair" hurts. My skin hurts. Clothes hurt. Bedding hurts. "Don't touch me!" It is also the inside thoughts of depression. There's a symptom called the M.S. hug. It has all the signs of having a heart attack. There are also symptoms that M.S. causes where you may think you are having a stroke. If I were to really be having either I fear I would not know the difference. Then there's standing and without warning just falling down. Lots of bruises. Modifying the house has helped. It also helps that my husband is able to lift me.

When I am able to go out of the house it doesn't mean I am not suffering. It is because I am not suffering some debilitating issue such as, muscle spasms, ataxia, vertigo, seizure without status epilepticus, or uncontrollable crying (which any normal person would cry about just the pain alone). Did I mention the pain and inflammation in the spine and brain?

There are many forms of M.S. I currently live with a progressive form. Secondary Progressive or SPMS. There is also Primary Progressive or PPMS. Then there is a benign form and an aggressive one that leads to death very rapidly. Most people start out with RRMS or Relapsing-Remitting. What neurologists won't tell you is that 85-90 percent go on to SPMS after 15-20 years. My theory is they don't do this because they don't know if perhaps you may be a "lucky" one in the 10-15 percent.

The cause of M.S. is unknown, so is the affect on any single person. Nor does any single person know from one day to the next or one minute to the next for that matter, how they are going to be feeling. When I wake up screaming in pain from my legs cramping in the night at least I know I am still alive. It's the waking up choking because I have stopped breathing that really scares me. The uncontrollable arm, leg or hand movements aren't my favorite either.

There are many opinions of what causes M.S. Some think it's a disease of the immune system. Others? A virus perhaps caused by Epstein Barr or some other unknown.

They hand out drugs for this disease with many side effects of their own. After it progresses there are no drugs. Only ones to control symptoms. The ones for RRMS are only in hopes of slowing the disease down.

One of my favorite lines from people (I'm being sarcastic) is "but you look fine." Or if I tell them I live with M.S. they start telling me their aches and pains. Or if I tell someone I am extremely tired they say they didn't get enough sleep last night either. I could sleep for hours and the tired that M.S. brings on is not the same tired for lack of sleep. I also am told that "I could pick you up and take you here or there." Or the really hurtful "Let's go out to a concert" or "lunch." When I try to explain I can't then I am abandoned. People don't understand that I can't make plans to go to events. I did make it to a very important wedding, but unable to attend my own father's Memorial. If I am well enough (believe me I can tell when that is) I could take myself here or there but that has become less often, and I don't go anywhere without my husband for many reasons.

I have several types of wheelchairs and walking devices. I have to take a lot of medication to control a lot of functions to be able to go out. Heat or extreme cold or humidity makes me very ill. How about the simple act of showering? It's a horrible and difficult experience for me.

Most people don't realize that big places or a lot of people around cause serious symptoms in a lot of people with M.S. (Yep! Me again!) I have no words to describe those celebrities who have RRMS and climb mountains or are still dancing or any number of activities. To me they add to bigger misconceptions of the disease. I wish them all the best and to either be in that 15 percent or have benign M.S. There are too many other symptoms to mention here. I have listed some of the more debilitating ones I experience.

Lori Chiolino


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