Four years ago, I was very healthy and very active. I was an account manager for a digital advertising company. I worked full time, managed over 160 clients, hit the gym 3-5 times a week, ate healthy, traveled far and wide, and never needed anything more than an urgent care doctor.
In Sept-Oct 2011, I got really sick, eventually couldn't walk, and we found a giant lesion in my brain. They spent months trying to determine if the lesion was a rare version of MS (called Tumefactive MS), a lymphoma, or a tumor. After a spinal tap, they decided it was most likely Tumefactive Multiple Sclerosis. In that first year I spent over 90 days in the hospital, and had to re-learn how to walk, due to extreme muscle weakness and nerve damage. I worked with Barrow Neurology and the Mayo Clinic during that time. I was extremely sick for about two years, then things started to even out. (I'm obviously skipping alot here!)
In 2014 I spent a great deal of time managing my health, but as long as I stayed on top of my strength training, healthy eating, bedtimes, and didn't do too much or stay up too late, I was pretty steady. My brain lesion seemed to stabilize, and I assumed it would be a non-issue, moving forward. During that year I met and fell in love with James, who I married in April 2015. (that's really the best part of this story!!)
In late August of 2015, I started having almost constant sick days--I just felt run down, the way you would during a nasty flu. Tired, achy--even small things feel like big chores. I started noticing weakness in my legs, and spent several weeks pretending it wasn't happening. (Sometimes that works, and things go away!) Eventually my legs got so weak that climbing stairs and doing daily activities became difficult and started causing pain, as my muscles were no longer supporting my joints properly. We noticed a significant amount of muscle atrophy in my quads, which was really upsetting to me, because I worked really hard to rebuild those muscles!! Doctors ordered an open muscle biopsy of my leg (a three inch incision--ouch!) which showed muscle denervation without reinnervation---basically, the nerves in my muscles are dying, so in certain spots my muscles are not connected to my brain.
My recent MRI shows that this brain lesion is growing (I have gotten three opinions). Neurologists are saying that at this point it looks most like a slow growing tumor (glioma) or a vascular malformation. They all have different opinions about which is more likely, but they all agree that it's important to find out. Obviously you can imagine the risks of a tumor. For the vascular malformation, they say it would likely be a capillary type malformation, a sub-type of an AVM. One doc said it could be a cavernous malformation. As if the biopsy wasn't risky enough, one doc said that if we try to biopsy this and it turns out to be a vascular mass, it could cause a hemorrhage in my brain. Obviously that's bad. So we are going to do everything we can to find a diagnosis without a biopsy. That means long days and expensive tests.
Docs also agree that whatever is causing this brain lesion is likely separate from most of my symptoms (Fatigue, leg muscle weakness, arm/hand stiffness, muscle atrophy, nerve pain, leg pain, muscle twitching, abnormal reflexes, feeling sick, etc) Meaning I have this brain lesion and a separate neurological condition. More details below in the neurologist update, but they are thinking it could be MS, Myasthenia Gravis, Stiff Person Syndrome, or a handful of other neurological conditions. So they are running tests for that too.
That's the basic update. See full update below for more details, or specifics on which tests we are going to run. Thanks so much for all the prayers and support, it means so much to me and to my family.
In Sept-Oct 2011, I got really sick, eventually couldn't walk, and we found a giant lesion in my brain. They spent months trying to determine if the lesion was a rare version of MS (called Tumefactive MS), a lymphoma, or a tumor. After a spinal tap, they decided it was most likely Tumefactive Multiple Sclerosis. In that first year I spent over 90 days in the hospital, and had to re-learn how to walk, due to extreme muscle weakness and nerve damage. I worked with Barrow Neurology and the Mayo Clinic during that time. I was extremely sick for about two years, then things started to even out. (I'm obviously skipping alot here!)
In 2014 I spent a great deal of time managing my health, but as long as I stayed on top of my strength training, healthy eating, bedtimes, and didn't do too much or stay up too late, I was pretty steady. My brain lesion seemed to stabilize, and I assumed it would be a non-issue, moving forward. During that year I met and fell in love with James, who I married in April 2015. (that's really the best part of this story!!)
In late August of 2015, I started having almost constant sick days--I just felt run down, the way you would during a nasty flu. Tired, achy--even small things feel like big chores. I started noticing weakness in my legs, and spent several weeks pretending it wasn't happening. (Sometimes that works, and things go away!) Eventually my legs got so weak that climbing stairs and doing daily activities became difficult and started causing pain, as my muscles were no longer supporting my joints properly. We noticed a significant amount of muscle atrophy in my quads, which was really upsetting to me, because I worked really hard to rebuild those muscles!! Doctors ordered an open muscle biopsy of my leg (a three inch incision--ouch!) which showed muscle denervation without reinnervation---basically, the nerves in my muscles are dying, so in certain spots my muscles are not connected to my brain.
My recent MRI shows that this brain lesion is growing (I have gotten three opinions). Neurologists are saying that at this point it looks most like a slow growing tumor (glioma) or a vascular malformation. They all have different opinions about which is more likely, but they all agree that it's important to find out. Obviously you can imagine the risks of a tumor. For the vascular malformation, they say it would likely be a capillary type malformation, a sub-type of an AVM. One doc said it could be a cavernous malformation. As if the biopsy wasn't risky enough, one doc said that if we try to biopsy this and it turns out to be a vascular mass, it could cause a hemorrhage in my brain. Obviously that's bad. So we are going to do everything we can to find a diagnosis without a biopsy. That means long days and expensive tests.
Docs also agree that whatever is causing this brain lesion is likely separate from most of my symptoms (Fatigue, leg muscle weakness, arm/hand stiffness, muscle atrophy, nerve pain, leg pain, muscle twitching, abnormal reflexes, feeling sick, etc) Meaning I have this brain lesion and a separate neurological condition. More details below in the neurologist update, but they are thinking it could be MS, Myasthenia Gravis, Stiff Person Syndrome, or a handful of other neurological conditions. So they are running tests for that too.
That's the basic update. See full update below for more details, or specifics on which tests we are going to run. Thanks so much for all the prayers and support, it means so much to me and to my family.
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