April 2015 - James and I get married!!
Sept 2015 - I start having regular sick days, and my leg muscles and hip muscles are feeling weak.
October 2015 - Hip and leg muscles are so weak they are causing horrible pain in my knees, hips, lower back. I feel unsteady when walking, I can barely make it through my days, and climbing stairs in our house is very difficult.
October 2015 - I am losing significant amounts of muscle mass in my quads
October 2015 - My doctor orders a muscle biopsy, which shows "muscle denervation, without evidence of reinnervation" and a series of other things. It rules out primary muscle disease, and lets us know this is a neurological disease affecting my leg muscles, but it doesn't tell us which disease.
November 2015 - My right leg (where they took the biopsy) starts to lose more of its mass. We measured an inch of muscle lost in my right leg, that didn't happen in my left. I get horrible pain in my right knee because my muscles are not supporting it properly. I start physical therapy, and start wearing a brace to help support my right leg and protect my knee.
November 2015 - I start to notice stiffness in my hands. I can still use them, but they feel stiff and often contract when I am not paying attention.
November 2015 - Muscle twitching and nerve pain all get worse, especially at night.
July-Nov 2015 - I fight with my insurance to let me go to the Mayo clinic. Mayo and all my other docs write letters to the insurance, stating that Mayo are the only ones who can help me with my complex case. In the past I have paid out of pocket, but can't afford it now. My insurance company requires me to see another neurologist first (who takes one look at my case and says its too big for him) and then they refuse to let me see Mayo anyways.
November 2015 - My interim neurologist runs a new MRI for me, but states that he does not feel qualified to handle my case, and recommends I find a way to get into Mayo. He writes a letter stating this to my insurance company.
November 2015 - I reach out to my old neurologist (Dr. Darin Okuda) from Barrow (the one who moved to Texas). He knows my case better than any other doctor, and wondered if he could help, given the situation. He looks at my MRI, then calls to give me results. He says my brain lesion is growing, which is obviously a problem. He suggests that at some point we may have to do a brain biopsy. Of all the docs to recommend that, he is the only one I would trust to make that call (he protected me from it so many times in the past!) But he said hopefully there are still tests we can run before that. He recommends a neurologist (who takes my insurance--yay!!) that he used to work with, and says he will coordinate with her and catch her up on my case. The new neurologist is Dr. Stacy Donlon.
Sept 2015 - I start having regular sick days, and my leg muscles and hip muscles are feeling weak.
October 2015 - Hip and leg muscles are so weak they are causing horrible pain in my knees, hips, lower back. I feel unsteady when walking, I can barely make it through my days, and climbing stairs in our house is very difficult.
October 2015 - I am losing significant amounts of muscle mass in my quads
October 2015 - My doctor orders a muscle biopsy, which shows "muscle denervation, without evidence of reinnervation" and a series of other things. It rules out primary muscle disease, and lets us know this is a neurological disease affecting my leg muscles, but it doesn't tell us which disease.
November 2015 - My right leg (where they took the biopsy) starts to lose more of its mass. We measured an inch of muscle lost in my right leg, that didn't happen in my left. I get horrible pain in my right knee because my muscles are not supporting it properly. I start physical therapy, and start wearing a brace to help support my right leg and protect my knee.
November 2015 - I start to notice stiffness in my hands. I can still use them, but they feel stiff and often contract when I am not paying attention.
November 2015 - Muscle twitching and nerve pain all get worse, especially at night.
July-Nov 2015 - I fight with my insurance to let me go to the Mayo clinic. Mayo and all my other docs write letters to the insurance, stating that Mayo are the only ones who can help me with my complex case. In the past I have paid out of pocket, but can't afford it now. My insurance company requires me to see another neurologist first (who takes one look at my case and says its too big for him) and then they refuse to let me see Mayo anyways.
November 2015 - My interim neurologist runs a new MRI for me, but states that he does not feel qualified to handle my case, and recommends I find a way to get into Mayo. He writes a letter stating this to my insurance company.
November 2015 - I reach out to my old neurologist (Dr. Darin Okuda) from Barrow (the one who moved to Texas). He knows my case better than any other doctor, and wondered if he could help, given the situation. He looks at my MRI, then calls to give me results. He says my brain lesion is growing, which is obviously a problem. He suggests that at some point we may have to do a brain biopsy. Of all the docs to recommend that, he is the only one I would trust to make that call (he protected me from it so many times in the past!) But he said hopefully there are still tests we can run before that. He recommends a neurologist (who takes my insurance--yay!!) that he used to work with, and says he will coordinate with her and catch her up on my case. The new neurologist is Dr. Stacy Donlon.
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