My Answers to Your Questions
Mamabug,
• I can trace my first symptoms back to around 1981. So what’s that…35 years or so?
• I started using a really cool looking walking stick in 1999, (16 years after my first possible symptom), I started using it mostly because I broke my hip when I fell skiing. It wasn’t until around 2007 that I started using a Rollator (4 wheeled walker with hand brakes) when I’m out and about, but now, in my home I mostly get around using a Power Chair.
In 1981, my symptoms weren’t called anything, and just thought to be some sort of back problem that was affecting my legs.
In 1987, my suddenly crossed eye was simply attributed to job related stress, though one doctor at Wills Eye Hospital casually mentioned the term, “MS,” but nobody else thought anything about it. I was told it would most likely go away on its own, which it did.
Finally, in 1993, after a few more mysterious episodes of unexplained numbness in my legs, the chiropractor that I saw, referred me to a neurologist who told me that I had Multiple Sclerosis. Because he was a doctor in a small town, I sought out some experts and went to The Cleveland Clinic. It was there that my condition was referred to as a case of “benign MS”, which was really RRMS.
While my present doctor, a top rated neurologist, has never called my condition, “Secondary Progressive MS,” (I think because there are no approve drugs to treat it and my insurance would no longer cover the Copaxone, which seems to be slowing the rate of progression.), I think the disease has morphed into SPMS.
• I’m no longer employed. Unfortunately, before my symptoms showed any signs of progressing, I quit my job, giving up my health insurance, to embark on a consulting career of my own and failed miserably.
I’m on SSDI. I went on SSDI in 2002, and as soon as I was approved, I sold my house using the proceeds to by a small Winnebago Mini and set off to see the USA. After visiting my friends in the Eastern US, I headed to Santa Barbara, after which I planned on setting out on a “No Plan Journey” that would take me wherever the moment dictated. … That never happened because, after just a few months, while still in SB, I experienced a serious relapse that left me unable to drive. I had to be treated with several days of intravenous high dose steroids and while I recovered, the experience left me concerned about the possibility of a relapse occurring somewhere where good medical help wasn’t available, Skittish about my future, I returned to my childhood home near Pittsburgh, PA, to be close to family, (I’m not married and have no kids), and good medical care. … That all occurred in 2003. I’m still there, but living in a small, one floor apartment house and sold the RV. I now spend most of my time at my computer, exchanging emails with a few of good friends with whom I lived when in college. - Ironmoon (John)
Mamabug,
• I can trace my first symptoms back to around 1981. So what’s that…35 years or so?
• I started using a really cool looking walking stick in 1999, (16 years after my first possible symptom), I started using it mostly because I broke my hip when I fell skiing. It wasn’t until around 2007 that I started using a Rollator (4 wheeled walker with hand brakes) when I’m out and about, but now, in my home I mostly get around using a Power Chair.
In 1981, my symptoms weren’t called anything, and just thought to be some sort of back problem that was affecting my legs.
In 1987, my suddenly crossed eye was simply attributed to job related stress, though one doctor at Wills Eye Hospital casually mentioned the term, “MS,” but nobody else thought anything about it. I was told it would most likely go away on its own, which it did.
Finally, in 1993, after a few more mysterious episodes of unexplained numbness in my legs, the chiropractor that I saw, referred me to a neurologist who told me that I had Multiple Sclerosis. Because he was a doctor in a small town, I sought out some experts and went to The Cleveland Clinic. It was there that my condition was referred to as a case of “benign MS”, which was really RRMS.
While my present doctor, a top rated neurologist, has never called my condition, “Secondary Progressive MS,” (I think because there are no approve drugs to treat it and my insurance would no longer cover the Copaxone, which seems to be slowing the rate of progression.), I think the disease has morphed into SPMS.
• I’m no longer employed. Unfortunately, before my symptoms showed any signs of progressing, I quit my job, giving up my health insurance, to embark on a consulting career of my own and failed miserably.
I’m on SSDI. I went on SSDI in 2002, and as soon as I was approved, I sold my house using the proceeds to by a small Winnebago Mini and set off to see the USA. After visiting my friends in the Eastern US, I headed to Santa Barbara, after which I planned on setting out on a “No Plan Journey” that would take me wherever the moment dictated. … That never happened because, after just a few months, while still in SB, I experienced a serious relapse that left me unable to drive. I had to be treated with several days of intravenous high dose steroids and while I recovered, the experience left me concerned about the possibility of a relapse occurring somewhere where good medical help wasn’t available, Skittish about my future, I returned to my childhood home near Pittsburgh, PA, to be close to family, (I’m not married and have no kids), and good medical care. … That all occurred in 2003. I’m still there, but living in a small, one floor apartment house and sold the RV. I now spend most of my time at my computer, exchanging emails with a few of good friends with whom I lived when in college. - Ironmoon (John)
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