signs point to yes
Posted: Mon Oct 31, 2011 5:08 pm
I'm a 35-year-old man getting closer and closer to a diagnosis of MS. Here's my story:
About eight months ago, I experienced numbness and tingling in the lower half of my body. I could walk OK, but I felt unsteady because of reduced sensation in my feet. After a few days of this, I made an appointment to see my primary care physician. He examined me, asked some questions, and ordered an array of blood tests. My vitamin B12 level came back as being low, so I started getting B12 injections, weekly for the first month and monthly since then (I'm about to go to bimonthly). My doctor said that nerve injuries can take a long time to heal and that I shouldn't expect immediate elimination of symptoms. At follow-up appointments, further testing showed that my B12 was inching up into the normal range (though more slowly than my doctor was expecting), and I felt that there had been improvement in my feet and legs. After four months or so, though, I mentioned that I felt like the improvement had plateaued; I had -- and still have -- some tingling in my feet and lower calves. My PCP referred me to a neurologist.
Over the course of several appointments, my neurologist ordered MRIs of my thoracic spine and brain, both of which showed lesions, and a lumbar puncture, which showed oligoclonal banding in the CSF. He said that this didn't definitively mean that I had MS, but he suspected that I would probably develop it eventually. However, he advised holding off on drug treatment for now. He scheduled me for another MRI in January and helped arrange for a second opinion from an MS specialist.
That appointment was this morning. It wasn't definitive either, but all signs seem to be pointing to a diagnosis of MS. There was a lot of information, but if I recall correctly, the doctor said that if there had a been a contrast-enhanced lesion on the MRIs, he would have said MS was nearly certain. He gave me a diagnosis of clinically isolated syndrome, which will likely progress to MS, and suggested I start drug therapy sooner rather than later. He also said I should get an MRI of my cervical spine. We briefly discussed the available drugs. He does not feel that oral Gilenya (fingolimod) is appropriate for me and suggested an injectable, probably Avonex or Copaxone, though he likely won't be the prescribing physician, so we didn't come a specific conclusion.
At this point, I'm pondering whether and when to start treatment and which drug might be appropriate for me. I've told my immediate family and a few close friends, and I go back and forth between stoicism and crying. Everything I've read suggests that this condition is much more manageable than it once was, but the idea that my body may very well begin a slow decline is terrifying. And it wasn't that long ago that I expected my doctor to tell me that I had a pinched nerve or some other minor ailment, if anything at all.
About eight months ago, I experienced numbness and tingling in the lower half of my body. I could walk OK, but I felt unsteady because of reduced sensation in my feet. After a few days of this, I made an appointment to see my primary care physician. He examined me, asked some questions, and ordered an array of blood tests. My vitamin B12 level came back as being low, so I started getting B12 injections, weekly for the first month and monthly since then (I'm about to go to bimonthly). My doctor said that nerve injuries can take a long time to heal and that I shouldn't expect immediate elimination of symptoms. At follow-up appointments, further testing showed that my B12 was inching up into the normal range (though more slowly than my doctor was expecting), and I felt that there had been improvement in my feet and legs. After four months or so, though, I mentioned that I felt like the improvement had plateaued; I had -- and still have -- some tingling in my feet and lower calves. My PCP referred me to a neurologist.
Over the course of several appointments, my neurologist ordered MRIs of my thoracic spine and brain, both of which showed lesions, and a lumbar puncture, which showed oligoclonal banding in the CSF. He said that this didn't definitively mean that I had MS, but he suspected that I would probably develop it eventually. However, he advised holding off on drug treatment for now. He scheduled me for another MRI in January and helped arrange for a second opinion from an MS specialist.
That appointment was this morning. It wasn't definitive either, but all signs seem to be pointing to a diagnosis of MS. There was a lot of information, but if I recall correctly, the doctor said that if there had a been a contrast-enhanced lesion on the MRIs, he would have said MS was nearly certain. He gave me a diagnosis of clinically isolated syndrome, which will likely progress to MS, and suggested I start drug therapy sooner rather than later. He also said I should get an MRI of my cervical spine. We briefly discussed the available drugs. He does not feel that oral Gilenya (fingolimod) is appropriate for me and suggested an injectable, probably Avonex or Copaxone, though he likely won't be the prescribing physician, so we didn't come a specific conclusion.
At this point, I'm pondering whether and when to start treatment and which drug might be appropriate for me. I've told my immediate family and a few close friends, and I go back and forth between stoicism and crying. Everything I've read suggests that this condition is much more manageable than it once was, but the idea that my body may very well begin a slow decline is terrifying. And it wasn't that long ago that I expected my doctor to tell me that I had a pinched nerve or some other minor ailment, if anything at all.