There is one whose rash words are like sword thrusts, but the tongue of the wisebrings healing. Proverbs 12:18 (ESV)
As I have been more open with my diagnosis of MS, more people ask me about the symptoms of the disease. I guess in my circle of influence, I am the poster child for MS. Most people will never know someone with the disease since it only affects about one in 750 people. The odds of getting MS are higher if you are a woman or if you have an immediate relative who has it, but it is still possible to get MS if you don’t have a relative with it. I am proof of that. Or at least I think so. I wish I had known about the disease when my paternal grandmother was alive. I vaguely remember her complaining about some of the same things that plague me today. But, I never thought to ask. Indeed, even if she had it, she may never have known. MS is on the list of top five illnesses doctors often miss though I think that we are placing too much blame on physicians. The symptoms of MS are so varied both among patients as a whole and in individuals that no one formula can be applied to everyone. The symptoms also come and go at random. I have had numbness in my hands, feet and legs off and on since at least 2003. I am lucky in that my health insurance does not require referrals, but that privilege may have led to the length of time it took to be diagnosed because I didn’t have one doctor looking at all my symptoms. When my hands and then, my feet started going numb, I went to orthopedic doctors, hand specialists, chiropractors and finally a spine doctor. The spine doctor, I went to because my back hurt. He is the one who put two and two together to make MS and sent me to a neurologist who specialized in MS, but not before I had seen my gynecologist for bladder issues, my eye doctor for vision problems, a counselor for depression and my primary care doctor for fatigue. The memory loss, cognitive and balance problems and muscle spasms in my legs, I chalked up to aging and didn’t complain about. I remember being so embarrassed to run into a couple from church and opening up my mouth to say hello only to have the sentence come out backwards. Or meeting people I knew well only to be unable to remember their names. Every Friday night for years, my in-laws babysat our kids and every Friday night, on the way home across the Skyway Bridge, I would have leg cramps and pain. But, none of it was enough to send off warning signs that something could be seriously wrong until the numbness and tingling got too strong to ignore. Even then, I was shocked to hear the words, multiple sclerosis. It was not at all in my vocabulary. Nor in my dictionary. Even now, I don’t know how to spell sclerosis without using spell check. Now of course, I talk about it freely. I don’t bring it up in random, routine conversations, but if someone asks I am honest. Of course, that sometimes leads them to confide their own symptoms and results in me urging them to get to the doctor right away. Most times, unnecessarily scaring them and their loved ones. So, I have to learn not to issue rash warnings that only conjure up wheelchairs and nursing homes, but to advise people who ask me what to do to see a neurologist. I’m no doctor, but I know enough to send people to one. Just one. Because it takes one astute person to listen and put all the pieces of the puzzle together.
Interestingly, for such a "rare" disease, I know 3 people, not at all connected, who have it – from very mild symptoms to one in a motorized wheel chair. Two of them are fairly open (this includes you), which helps me have a better idea of what they are faced with. Thank you for your honesty about this disease because without it, a lot of us would have no clue.