Hello All!
I am a longtime lurker who has come here for answers, information, and comfort many times over the past 8.5 years since my symptoms began. I am sharing my story in the hopes it can provide comfort and/or information to other people like me who were in limbo for so long.
I started with tingly, burning feet and after a referral from my primary care doc landed in a neurologist's office. He ordered an MRI which showed multiple scattered white matter lesions. He called me in and told me and my husband that he was 80% sure it was MS. He then ordered spinal MRI's and an LP and a TON of blood work. All of which were negative. Zero O-bands, perfect spinal MRIs, and perfect bloodwork. My doc backed off the diagnosis and said we had to wait and see. My lesions, though there were 10+, were not typical for MS. They were in the "wrong places" and were sort of the wrong shape, too.
In the meantime, I went to see a couple of other doctors because I am nothing if not thorough (read: Type-A). MS Specialist #2 told me that I did not have MS and literally said, "Go home, kiss your kids, and don't think about this anymore." Okay... I left his office feeling more confused than ever. If I didn't have MS - why did I have lesions at the age of 32?
MS Specialist #3 (Cleveland Clinic), took a lot of time with me and ultimately said, "You do not meet the criteria for diagnosis right now - but if I had to guess I'd bet we are dealing with an early, mild MS."
For the next 8 years, I have faithfully followed up with my regular doctor. My symptoms have continued and have always been sensory, relatively mild, and confined to the left leg and foot. My brain MRI only changed once in that time period - doc thought it looked a little worse - so he repeated the LP and spinal MRIs and bloodwork. Again, all was normal. That was 2 years ago.
Fast-foward to about a month ago - I started having an aching pain in the soles of both my feet. This was in addition to the burning sensation I've always had. I called the doc, he saw me and said he thought it might indicate spinal cord involvement. He ordered an MRI of my C and T spine, and sure enough there are 2 lesions on my cervical spine. C2/C3.
He recommended I start Tecfidera right away, and I did so yesterday. So far, so good. First day I had some flushing, but today so far - nothing. I've only taken 3 doses - so I know i have a long road ahead.
It's kind of weird now having the official diagnosis. I thought it would make me feel better knowing what I am dealing with - but honestly - knowing there is something eating away the myelin in my spinal cord takes my breath away. I am sure I will get used to this with time and will be able to hopefully confine it to the highest shelf in the tallest tower of my mind. But now it's hard. I'm scared and worried for the future.
Anyway, I wanted to reach out to those of you who are still seeking answers. I know how hard it is to know something is not right in your body - but to be unable to find the cause. I guess the moral is keep on top of it, find a doctor you trust, and trust your instincts.
I am a longtime lurker who has come here for answers, information, and comfort many times over the past 8.5 years since my symptoms began. I am sharing my story in the hopes it can provide comfort and/or information to other people like me who were in limbo for so long.
I started with tingly, burning feet and after a referral from my primary care doc landed in a neurologist's office. He ordered an MRI which showed multiple scattered white matter lesions. He called me in and told me and my husband that he was 80% sure it was MS. He then ordered spinal MRI's and an LP and a TON of blood work. All of which were negative. Zero O-bands, perfect spinal MRIs, and perfect bloodwork. My doc backed off the diagnosis and said we had to wait and see. My lesions, though there were 10+, were not typical for MS. They were in the "wrong places" and were sort of the wrong shape, too.
In the meantime, I went to see a couple of other doctors because I am nothing if not thorough (read: Type-A). MS Specialist #2 told me that I did not have MS and literally said, "Go home, kiss your kids, and don't think about this anymore." Okay... I left his office feeling more confused than ever. If I didn't have MS - why did I have lesions at the age of 32?
MS Specialist #3 (Cleveland Clinic), took a lot of time with me and ultimately said, "You do not meet the criteria for diagnosis right now - but if I had to guess I'd bet we are dealing with an early, mild MS."
For the next 8 years, I have faithfully followed up with my regular doctor. My symptoms have continued and have always been sensory, relatively mild, and confined to the left leg and foot. My brain MRI only changed once in that time period - doc thought it looked a little worse - so he repeated the LP and spinal MRIs and bloodwork. Again, all was normal. That was 2 years ago.
Fast-foward to about a month ago - I started having an aching pain in the soles of both my feet. This was in addition to the burning sensation I've always had. I called the doc, he saw me and said he thought it might indicate spinal cord involvement. He ordered an MRI of my C and T spine, and sure enough there are 2 lesions on my cervical spine. C2/C3.
He recommended I start Tecfidera right away, and I did so yesterday. So far, so good. First day I had some flushing, but today so far - nothing. I've only taken 3 doses - so I know i have a long road ahead.
It's kind of weird now having the official diagnosis. I thought it would make me feel better knowing what I am dealing with - but honestly - knowing there is something eating away the myelin in my spinal cord takes my breath away. I am sure I will get used to this with time and will be able to hopefully confine it to the highest shelf in the tallest tower of my mind. But now it's hard. I'm scared and worried for the future.
Anyway, I wanted to reach out to those of you who are still seeking answers. I know how hard it is to know something is not right in your body - but to be unable to find the cause. I guess the moral is keep on top of it, find a doctor you trust, and trust your instincts.
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