It’s been a long time since I was active on a forum (anyone here from BYDLS about 10-12 years ago?), so please excuse me if I babble. After 40 years of problems, I’m finally getting my MS diagnosis! Haven’t met with the neuro yet, but my results have been posted online. Anyway, I’ve been dancing in my head for several days now.
Too many doctors over the years wouldn’t take me seriously. The old family doctor spent 7 years telling me that I was a drug-seeking teenager who just needed to adapt to my growing pains. The next made it clear that I was a hypochondriac with panic attacks and wanted me to take potentially-addictive tranquilizers. I’ve been with the current GP for 32 years now, and while she’s faithfully sent me for tests and to specialists, she’s also been open from the beginning that she didn’t know what was wrong with me.
Unfortunately, the ophthalmologist, when I was having double and blurred vision, gave me a clean bill of health and walked away. The upper GI, when I was having trouble speaking and swallowing, had me surrounded by puzzled technicians explaining that I just wasn’t moving my tongue the right way, and if I’d learn how to do it properly all my problems would go away.
The ER declared that I was clearly an alcoholic, because there was no other reason I’d be toppling over backwards and giving myself concussions (forget the fact that I’ve never been a drinker). The MS specialist that was notified by an alert ER physician informed me that my only problem is that I smoke and no tests are necessary. The next neuro explained that 15 was too young for MS and 40 too old, so he absolutely wouldn’t even consider it. After 3 visits, he told me not to come back because there was nothing more he could for me. Meanwhile, I was using a cane on a daily basis and occasionally needed a wheelchair. There were nights when my teenaged daughter had to feed me through a straw, because I could neither hold a fork nor swallow solid foods.
I pretty much gave up on doctors after 2007. I’d lost my health insurance and had run out of money for co-pays before that. My parents thought I needed psychiatric help. My extended relatives called me a drunk. My kids were the only ones who stood by me, because they saw me go to work every day and dealt with my exhaustion after I got home.
Four years ago, I was diagnosed with a series of idiopathic TIA’s, which have now numbered more than 40. After the 6th one, I’d lost most of my remaining strength and stamina. My cognition and short-term memory went south. I took a significant pay cut to switch to a less-active job, and then I had to change again when I realized my body was failing me.
Last Fall, I spoke with my GP about the possibility of Disability, and she explained that I simply didn’t have the medical records or diagnosis necessary. By Spring, I was missing so much work that I requested intermittent FMLA. Since my employer refused to alter my hours until very recently, I started running through those days like crazy. I live alone now, the kids are long gone, my mother’s a widow. Fortunately, she was left a rather wealthy widow, so she’s been helping me out financially, but there’s not enough money to support 2 households indefinitely. I’m currently working four 4-hour days, but it’s a struggle to do that and I wind up calling off half the time.
My GP referred me to a neuro about whom she’d heard good things, and I adore him! His eyebrows raised when I explained that I’d had problems since age 15, but he never patronized me or treated me like a nutcase. Since he didn’t have access to my old records, he said we’d just start over from the beginning to rule things out, and that maybe it’s time to look for the less-common illnesses. I’ve had 26 blood tests in one day, another MRI, an EMG, nerve conduction test, sleep study, and spinal tap. He also believes that the TIA’s were misdiagnosed and were actually MS attacks. He’s done more for me in 3 months than all the other doctors put together over the last 4 decades. I see him again in 2 weeks to discuss possible treatment options, and I finally have hope.
Too many doctors over the years wouldn’t take me seriously. The old family doctor spent 7 years telling me that I was a drug-seeking teenager who just needed to adapt to my growing pains. The next made it clear that I was a hypochondriac with panic attacks and wanted me to take potentially-addictive tranquilizers. I’ve been with the current GP for 32 years now, and while she’s faithfully sent me for tests and to specialists, she’s also been open from the beginning that she didn’t know what was wrong with me.
Unfortunately, the ophthalmologist, when I was having double and blurred vision, gave me a clean bill of health and walked away. The upper GI, when I was having trouble speaking and swallowing, had me surrounded by puzzled technicians explaining that I just wasn’t moving my tongue the right way, and if I’d learn how to do it properly all my problems would go away.
The ER declared that I was clearly an alcoholic, because there was no other reason I’d be toppling over backwards and giving myself concussions (forget the fact that I’ve never been a drinker). The MS specialist that was notified by an alert ER physician informed me that my only problem is that I smoke and no tests are necessary. The next neuro explained that 15 was too young for MS and 40 too old, so he absolutely wouldn’t even consider it. After 3 visits, he told me not to come back because there was nothing more he could for me. Meanwhile, I was using a cane on a daily basis and occasionally needed a wheelchair. There were nights when my teenaged daughter had to feed me through a straw, because I could neither hold a fork nor swallow solid foods.
I pretty much gave up on doctors after 2007. I’d lost my health insurance and had run out of money for co-pays before that. My parents thought I needed psychiatric help. My extended relatives called me a drunk. My kids were the only ones who stood by me, because they saw me go to work every day and dealt with my exhaustion after I got home.
Four years ago, I was diagnosed with a series of idiopathic TIA’s, which have now numbered more than 40. After the 6th one, I’d lost most of my remaining strength and stamina. My cognition and short-term memory went south. I took a significant pay cut to switch to a less-active job, and then I had to change again when I realized my body was failing me.
Last Fall, I spoke with my GP about the possibility of Disability, and she explained that I simply didn’t have the medical records or diagnosis necessary. By Spring, I was missing so much work that I requested intermittent FMLA. Since my employer refused to alter my hours until very recently, I started running through those days like crazy. I live alone now, the kids are long gone, my mother’s a widow. Fortunately, she was left a rather wealthy widow, so she’s been helping me out financially, but there’s not enough money to support 2 households indefinitely. I’m currently working four 4-hour days, but it’s a struggle to do that and I wind up calling off half the time.
My GP referred me to a neuro about whom she’d heard good things, and I adore him! His eyebrows raised when I explained that I’d had problems since age 15, but he never patronized me or treated me like a nutcase. Since he didn’t have access to my old records, he said we’d just start over from the beginning to rule things out, and that maybe it’s time to look for the less-common illnesses. I’ve had 26 blood tests in one day, another MRI, an EMG, nerve conduction test, sleep study, and spinal tap. He also believes that the TIA’s were misdiagnosed and were actually MS attacks. He’s done more for me in 3 months than all the other doctors put together over the last 4 decades. I see him again in 2 weeks to discuss possible treatment options, and I finally have hope.
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