My name's Nicole and I live in a town south of Seattle. I'm a 39 year old legal assistant, single mom, and newly diagnosed with MS.
A few years ago -- I think in 2009 or 2010, I can't remember exactly, my right side was somewhat numb. I went to the doctor and he sent me for bloodwork, all of which came back in normal ranges. Then the numbness went away, so I went on my merry way.
I've always been clumsy. Like, my entire life I've been a walking disaster. Last October I took a tumble down my stairs at home and sprained my ankle. In January, 6 days after my mother's passing due to lung cancer, I fell down my neighbor's steps in the dark outside and broke my foot bad enough to require surgery to repair it. While recovering, my right arm and hand went numb. I couldn't do anything -- I couldn't write, I couldn't drive, I couldn't hold a cup. I thought I had a pinched nerve from the stupid knee scooter I was using and went to the doctor who set me up with PT.
After 13 PT sessions, I wasn't any better, not even marginally, so I stopped going. $30/appointment adds up pretty quick! I thought I'd just deal with it. This was in April, I believe. In May, right around the time of my birthday, my right leg went numb, too. Off to the doctor I went, where an MRI was ordered.
I got a call after the MRI got read about several lesions in the white matter of my brain. That sounds scary. I got set up with a neurologist, the one who could see me the soonest. Turns out, he's well known and respected for his MS work. I went to see him and he ordered bloodwork and a lumbar puncture (which sounds so much more painful than a spinal tap!).
The bloodwork all came back pointing to MS. I went in for the LP, and suffered with a horrendous headache for a week. The results of that came back pointing to MS. So...guess what? MS it is.
I went back to my neurologist, and told him I'd like to try the Avonex to start out with. He'd asked me to research three drugs and Avonex seemed to be the one I'd be most likely to stick with since it's only once a week. He told me that he actually has a new clinical study starting soon with Fingolimod/FTY720, and if I was interested, he thinks I'd be a perfect candidate. I'd be randomly chosen for either the Fingolimod or to get the Avonex shot. All my appointments would be free of charge to me, and my medication would be free of charge for as long as I'm a part of the study (about a year). So, that's what I'm going for. Why not?
I've submitted FMLA paperwork to my employer since I will be missing work for this stuff, and just for feeling crummy. Yesterday, I got up at my usual 5 am, and realized there was no way I could make it through a work day. I was so exhausted I could hardly walk into the bathroom, so I called in. And I slept until 11:30 (I NEVER do that), and then took a nap in the afternoon. I'm so sick of being exhausted. This isn't like me.
I have a very active 16 year old who wants to do things with me, and who is really tired of having to do most of the housework since I don't have the energy to do it.
My Vitamin D supplements seems to be helping with the numbness a bit, so that's a positive thing.
And I sound like I'm whining. Maybe I am today. I've been trying so hard to stay positive, but sometimes it's really hard. Today is one of those days.
If you got through this, you deserve brownie points.
A few years ago -- I think in 2009 or 2010, I can't remember exactly, my right side was somewhat numb. I went to the doctor and he sent me for bloodwork, all of which came back in normal ranges. Then the numbness went away, so I went on my merry way.
I've always been clumsy. Like, my entire life I've been a walking disaster. Last October I took a tumble down my stairs at home and sprained my ankle. In January, 6 days after my mother's passing due to lung cancer, I fell down my neighbor's steps in the dark outside and broke my foot bad enough to require surgery to repair it. While recovering, my right arm and hand went numb. I couldn't do anything -- I couldn't write, I couldn't drive, I couldn't hold a cup. I thought I had a pinched nerve from the stupid knee scooter I was using and went to the doctor who set me up with PT.
After 13 PT sessions, I wasn't any better, not even marginally, so I stopped going. $30/appointment adds up pretty quick! I thought I'd just deal with it. This was in April, I believe. In May, right around the time of my birthday, my right leg went numb, too. Off to the doctor I went, where an MRI was ordered.
I got a call after the MRI got read about several lesions in the white matter of my brain. That sounds scary. I got set up with a neurologist, the one who could see me the soonest. Turns out, he's well known and respected for his MS work. I went to see him and he ordered bloodwork and a lumbar puncture (which sounds so much more painful than a spinal tap!).
The bloodwork all came back pointing to MS. I went in for the LP, and suffered with a horrendous headache for a week. The results of that came back pointing to MS. So...guess what? MS it is.
I went back to my neurologist, and told him I'd like to try the Avonex to start out with. He'd asked me to research three drugs and Avonex seemed to be the one I'd be most likely to stick with since it's only once a week. He told me that he actually has a new clinical study starting soon with Fingolimod/FTY720, and if I was interested, he thinks I'd be a perfect candidate. I'd be randomly chosen for either the Fingolimod or to get the Avonex shot. All my appointments would be free of charge to me, and my medication would be free of charge for as long as I'm a part of the study (about a year). So, that's what I'm going for. Why not?
I've submitted FMLA paperwork to my employer since I will be missing work for this stuff, and just for feeling crummy. Yesterday, I got up at my usual 5 am, and realized there was no way I could make it through a work day. I was so exhausted I could hardly walk into the bathroom, so I called in. And I slept until 11:30 (I NEVER do that), and then took a nap in the afternoon. I'm so sick of being exhausted. This isn't like me.
I have a very active 16 year old who wants to do things with me, and who is really tired of having to do most of the housework since I don't have the energy to do it.My Vitamin D supplements seems to be helping with the numbness a bit, so that's a positive thing.
And I sound like I'm whining. Maybe I am today. I've been trying so hard to stay positive, but sometimes it's really hard. Today is one of those days.
If you got through this, you deserve brownie points.
2 Legit 2 Quit
you have alot on your plate, but remember if you don't take care of you, you can't expect to care for others. Just take things slow for now, and tell your neuro about all your symptoms. IT'S NOT WHINING!!!!!!!! Good luck.
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