I have actually been doing pretty well with the MS until last week. My neurologist had put me on Immuran a few months ago and it seemed to beat back the monster. That is, until this week. Suddenly my left leg is weaker and more painful, I'm exhausted with no exertion. The MS hug decided I wasn't getting enough hugs in real life I guess and has re-emerged to make up for it. (Note the sarcastic wit). Then on top of it all I fell. Perfect. Like I need a fall with my back as bad as it is.
So I'm dealing with it all by using my machine and trying to get some extra rest. I know if I called my neuro he'd put me on steroids. They work, but for me the side effects are brutal. So, I'd just as soon avoid them as long as possible.
I'm hoping this is a pseudo exacerbation due to the heat (thats my story and I'm stickin to it)! Of course, it isn't as pseudo exacerbations go away when the irritant is gone. i.e. heat, stress etc. This has been going on for almost two weeks. So it's a full blown exacerbation. Whoop de do.
Thursday, July 08, 2010
Monday, July 05, 2010
MS Sucks
Spent some time in Texas. Had my machine fine tuned and received some new protocols. The Immuran my Neurologist put me on about 3 months ago really put my MS into remission. The first two weeks on the med was rough, but now I have so side effects at all. It was just a matter of hanging tough through it all. I've been doing pretty well, up to the last few days. Don't know what triggered this "little" exacerbation I'm experiencing, quite possibly the travel back from Texas last week. Now my MS pain has flared up as well as balance issues. No falls thank God.
I haven't been blogging like I should, but I have had so much on my plate to deal with. My back, my MS and my hearing. I just needed to take a break, but I'm back now :)
I haven't been blogging like I should, but I have had so much on my plate to deal with. My back, my MS and my hearing. I just needed to take a break, but I'm back now :)
Saturday, April 17, 2010
I won't complain about the weather again!
Today was an absolutely gorgeous day here. The high was in the low 70's. The morning had no breeze (unheard of here), so sitting at the patio table felt wonderful. Then, my husband informs me were supposed to get SNOW next week! WHAT?! No flipping way! I want SPRING to stay. I'm tired of the snow and the COLD. I want to be able to sit on my patio, basking in the sunlight without a heavy coat on! Waaa Waaa Waaa.
Then I read Wendy's latest entry http://wendybooker.wordpress.com I'll never complain about the cold again. Imagine waking up and having your sleeping back covered with ice particles and the clothes you washed the night before, frozen solid! She actually sleeps with her tent flap OPEN.....at 16 degrees!
Wendy isn't eating enough (They require 8000 calories A DAY). She's having a tough time swallowing. I hope she is able to eat better soon and this doesn't become something that stops her mission.
Her experience is an amazing thing to read about. The more I read the higher my level of respect for her goes. I have a tough time just getting out of bed in the morning. I can't imagine how she does it. One of the questions I have for her is how she battles MS fatigue! I know when I get tired my balance is even worse than "normal" and if I push myself I'm in bed the next day. How on earth is she able to push her body to such limits. I can't wait to ask her the questions!
If you have a few minutes, read her blog. She is one amazing lady!
Then I read Wendy's latest entry http://wendybooker.wordpress.com I'll never complain about the cold again. Imagine waking up and having your sleeping back covered with ice particles and the clothes you washed the night before, frozen solid! She actually sleeps with her tent flap OPEN.....at 16 degrees!
Wendy isn't eating enough (They require 8000 calories A DAY). She's having a tough time swallowing. I hope she is able to eat better soon and this doesn't become something that stops her mission.
Her experience is an amazing thing to read about. The more I read the higher my level of respect for her goes. I have a tough time just getting out of bed in the morning. I can't imagine how she does it. One of the questions I have for her is how she battles MS fatigue! I know when I get tired my balance is even worse than "normal" and if I push myself I'm in bed the next day. How on earth is she able to push her body to such limits. I can't wait to ask her the questions!
If you have a few minutes, read her blog. She is one amazing lady!
Thursday, April 15, 2010
Laquinimod
We've all been waiting for an oral MS medication. I know I'm tired of the needle's.
An article came out today in Business Wire http://www.businesswire.com/portal/site/home/permalink/?ndmViewId=news_view&newsId=20100415006164&newsLang=en containing recent study information on Laquinimod.
Manufactured by Teva, Laquinimod is showing some pretty promising, if unexpected, results. The idea of the drug is to reduced the amount of exacerbations experienced with RRMS through immunomodulation. An unexpected positive effect exhibited has been that it appears that in additional to anti-inflammatory properties the drug may also give neuro protection. Wouldn't that be something? A once a day pill that would knock down the amount of exacerbations you have AND protect your neurons. This would mean protection against permanent neurological damage.
Current animal studies show that following treatment with Laquinimod there were significant reductions in the extent of demyelination, and more axonal preservation within spinal cord lesions. Additionally, infiltration of inflammatory cells into the spinal cord and brain were reduced.
Laquinimod also has also promise with Rheumatoid Arthritis, insulin-dependent diabetes mellitus, Guillain Barré Syndrome, Lupus and Inflammatory Bowel Disease.
Laquinimod was given fast track designation in February of 2009. It will be interesting to see what the phase III trials show. Their results are expected later this year.
An article came out today in Business Wire http://www.businesswire.com/portal/site/home/permalink/?ndmViewId=news_view&newsId=20100415006164&newsLang=en containing recent study information on Laquinimod.
Manufactured by Teva, Laquinimod is showing some pretty promising, if unexpected, results. The idea of the drug is to reduced the amount of exacerbations experienced with RRMS through immunomodulation. An unexpected positive effect exhibited has been that it appears that in additional to anti-inflammatory properties the drug may also give neuro protection. Wouldn't that be something? A once a day pill that would knock down the amount of exacerbations you have AND protect your neurons. This would mean protection against permanent neurological damage.
Current animal studies show that following treatment with Laquinimod there were significant reductions in the extent of demyelination, and more axonal preservation within spinal cord lesions. Additionally, infiltration of inflammatory cells into the spinal cord and brain were reduced.
Laquinimod also has also promise with Rheumatoid Arthritis, insulin-dependent diabetes mellitus, Guillain Barré Syndrome, Lupus and Inflammatory Bowel Disease.
Laquinimod was given fast track designation in February of 2009. It will be interesting to see what the phase III trials show. Their results are expected later this year.
Just who is Wendy Booker?
I've decided to add a few new components to my blogging. As with everything in life my blog is changing and evolving. I have been following a woman named Wendy Booker. Her name may sound familiar to you if you receive the MS connections magazine. Wendy is the amazing woman who as I type, in in Nepal and arriving at her Mt. Everest base camp sometime today.
What makes Wendy so special (even though she herself doesn't consider herself to be so)? She has been climbing the highest mountains on each continent. Her goal? To be the first person with MS to climb all the seven summits. Mt. Everest is the last summit for her to climb in order to meet her goal. She expects to complete the 29,000 foot climb in May.
I have been given the unique opportunity to be able to have a question and answer session with Wendy, and even a possible phone conversation! I wanted to share this with all of you and encourage you to follows Wendy's journey at www.wendybooker.net
If you would like to ask Wendy any questions please let me know and I will incorporate them with mine. I will then post all the questions and answers here. I'm very excited about this project and am looking forward to your feedback!
What makes Wendy so special (even though she herself doesn't consider herself to be so)? She has been climbing the highest mountains on each continent. Her goal? To be the first person with MS to climb all the seven summits. Mt. Everest is the last summit for her to climb in order to meet her goal. She expects to complete the 29,000 foot climb in May.
I have been given the unique opportunity to be able to have a question and answer session with Wendy, and even a possible phone conversation! I wanted to share this with all of you and encourage you to follows Wendy's journey at www.wendybooker.net
If you would like to ask Wendy any questions please let me know and I will incorporate them with mine. I will then post all the questions and answers here. I'm very excited about this project and am looking forward to your feedback!
Wednesday, April 14, 2010
My big red bike...the community project..and my second childhood begins.
MS has taken up such a large portion of my life, for so long, in such a negative way that my "well" was beginning to run dry. Heck, not beginning, WAS dry.
There have simply been so many things going on in my life the past two years. I discovered that I was simply stretched to thin and hadn't taken the time to make sure I kept my "well" filled. My second childhood began last month with the arrival of my fire engine red tricycle. That tricycle has become know in my subdivision as the "community project". It arrived in a million pieces with very poor instructions. As neither my husband nor I are/were bicycle folks neither one of us knew the first thing about putting the silly thing together. However, with lot's of laughter, frustration and a few colorful words thrown in we got it together......sorta. We couldn't get the chain on or the brakes working. (I still have the scab on my knee from the brakes not working properly)!
One neighbor tried to help us get the chain on....he couldn't do it either. Father Wes dropped in and helped get the brakes working after yet another neighbor had tried unsuccessfully. The local lawn mover shop (we don't have a bicycle shop within an hour of us) got the chain on. Yet another neighbor helped tighten everything. Finally, it was together. Whoohoooo.....I took it for a ride and the chain popped off around the block. So, yet another neighbor put the chain back on and adjusted the gears for me. See, community project.
However, more importantly that red tricycle has got me out and about. Something I've needed for awhile after being almost completely house bound for the past two years. The exercise is good for me. While I can only ride for short distances right now, due to my poor leg strength, I try to ride everyday. I hope that soon riding around the block will be the norm instead of the exception.
My tricycle makes a funny rubbing noise when I ride it, but that's O.K. I think it gives it character...of course I'm sure yet another neighbor will hear it and figure out how to fix it. All I need now is a tall flag to put on the back...and a baseball card clipped to the spokes.
There have simply been so many things going on in my life the past two years. I discovered that I was simply stretched to thin and hadn't taken the time to make sure I kept my "well" filled. My second childhood began last month with the arrival of my fire engine red tricycle. That tricycle has become know in my subdivision as the "community project". It arrived in a million pieces with very poor instructions. As neither my husband nor I are/were bicycle folks neither one of us knew the first thing about putting the silly thing together. However, with lot's of laughter, frustration and a few colorful words thrown in we got it together......sorta. We couldn't get the chain on or the brakes working. (I still have the scab on my knee from the brakes not working properly)!
One neighbor tried to help us get the chain on....he couldn't do it either. Father Wes dropped in and helped get the brakes working after yet another neighbor had tried unsuccessfully. The local lawn mover shop (we don't have a bicycle shop within an hour of us) got the chain on. Yet another neighbor helped tighten everything. Finally, it was together. Whoohoooo.....I took it for a ride and the chain popped off around the block. So, yet another neighbor put the chain back on and adjusted the gears for me. See, community project.
However, more importantly that red tricycle has got me out and about. Something I've needed for awhile after being almost completely house bound for the past two years. The exercise is good for me. While I can only ride for short distances right now, due to my poor leg strength, I try to ride everyday. I hope that soon riding around the block will be the norm instead of the exception.
My tricycle makes a funny rubbing noise when I ride it, but that's O.K. I think it gives it character...of course I'm sure yet another neighbor will hear it and figure out how to fix it. All I need now is a tall flag to put on the back...and a baseball card clipped to the spokes.
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