As always, thanks for the person that responded in support of Tysabri. usually, I research the heck of something before typing out loud about what I'm thinking. It was a week moment. So, again, thanks for the information.
Last week was the marathon week that started off on such a lovely note. In home care called and arranged for a time for the nurse to come for my infusion: 3:30 to 4:30. At 2;30, nurse calls and says I need directions. Then the oh crap thought hits. She might be on her way. And she was and by the time I got there at 3:20, she was ticked. Not my fault.
Took two sticks to get the line in. Then the fun began. Solumedrol is such a wonderful thing. Instant help. Of course, when there's enough prednisone to jump start a car. . . As usual, most people at work forgot that I had this once before, so the questions started. By now word had spread about the MS, but most people still don't know. Standard response: It's just a cath tube for an IV.
Thursday: MRI. Another catch. Insurance companies in their infinite wisdom over business practices vs health chose not to authorize contrast in the MRI. Instead of 3 to 4 hours inside, I did 90 minutes. "Your doctor will fight it out with the insurance company and we'll get you back in here." "Probably Monday on your results." Damned if they didn't call on Friday after business hours were over and I missed the call.
Called today at 10:00. The results: As if it was going to be a surprise. Lesions on C2 and C3 have shrunk and you have a new lesion on T6. You don't have to have the follow up contrast, keep up with the steroids and your injections, keep your appointment and call if anything changes.
Had to tell the parents, since they kind of suspected something since I wasn't working at the other job as much as I should. Instant worry. Instant regrets.
Stay tuned.
26 January 2009
17 January 2009
Yes, It's been a while
First off, as always, thanks for the response to my last post, I believe.
I'm not a number counter by any means. It was only meant to put a bottom line on something. But thanks for the haiku.
I adopted a couple of cats right before Christmas. They are 9 months old now and brother and sister. They are Maine Coon mixes. Maine Coons are pretty much a dog in a cats body. Take the best traits of both and there you go. Pure breeds can get large. A not fat cat male can get close to 20 pounds. They can get huge manes, have tufted ears and furry paws. It's nice having something to come home to and something to take care of besides myself.
Last time I signed off with that my fingers were getting all tingly. Things got worse after that. I had a cold which took me three weeks to get over versus two weeks that it took everyone else. After that, I don't really know if it was a stomach virus or something else, but well, you get the idea. It could have been just me talking myself into puking. I had dinner and with every bite I just felt more and more bloated. For the rest of the night it was "I would feel better if I just threw up." Since I felt like crap and I don't willing puke on my own, I decided to go to bed and sleep through it and by morning it would be better. Every time I woke up, it wasn't any better. Finally, by three in the morning, what little I had in my stomach came up.
That's when things changed.
The myelitis had gradually came back not quite to the level where it was at it's worst, but close. Since MS is thought to be auto-immune and auto-immune by definition is your immune system gone into overload, I could have had a virus and what happened next could have been an exacerbation.
My legs are horrible. Just intense tingling and just the tightest feeling I have ever known. Just imagine a rubber band pulled to its breaking point. Just standing for any length of time is pins and needs. Knees and ankles . . . I look like a puppy that's going to grow up to be a big dog. Small legs but big feet just flailing all over the place. The thing with my hands went away and with this came back. My left hand went tingly at the fingertips and worked it's way down. My right hand, something entirely different. If felt like it would if you slapped something really hard. It would itch to no end. So bad that I had to put on a cotton glove so I wouldn't scratch it bloody.
Friday I had my check up with my neurologist. Like a previous post I had, they are the most depressing things when things are going bad. You have to spill your guts about how your body is deteriorating and there's really nothing that can be done except steroids to lessen the inflammation.
The outcome: The prednisone by tablet doesn't seem to really work for you so lets do the Solumedrol followed by a prednisone taper. Since I was due for an MRI, lets do cranium, cervical, and thoracic. Also, we might start thinking about changing meds. Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market.
Starting Monday, I'll have a new catheter and an IV bag a day ending on Friday, followed by 20 days of tablets. Thursday I get to sit in the MRI drum for 4 hours since they are doing all three areas at once and since it's with contrast, I get to come home and then do an IV bag. But no biggie, I'm on steroids, I'll be wired for the next month. With the remaining question: Will it do any good?
Sometimes I don't know whether I want to shout or cry. Most of the time I just keep on keeping on.
I'm not a number counter by any means. It was only meant to put a bottom line on something. But thanks for the haiku.
I adopted a couple of cats right before Christmas. They are 9 months old now and brother and sister. They are Maine Coon mixes. Maine Coons are pretty much a dog in a cats body. Take the best traits of both and there you go. Pure breeds can get large. A not fat cat male can get close to 20 pounds. They can get huge manes, have tufted ears and furry paws. It's nice having something to come home to and something to take care of besides myself.
Last time I signed off with that my fingers were getting all tingly. Things got worse after that. I had a cold which took me three weeks to get over versus two weeks that it took everyone else. After that, I don't really know if it was a stomach virus or something else, but well, you get the idea. It could have been just me talking myself into puking. I had dinner and with every bite I just felt more and more bloated. For the rest of the night it was "I would feel better if I just threw up." Since I felt like crap and I don't willing puke on my own, I decided to go to bed and sleep through it and by morning it would be better. Every time I woke up, it wasn't any better. Finally, by three in the morning, what little I had in my stomach came up.
That's when things changed.
The myelitis had gradually came back not quite to the level where it was at it's worst, but close. Since MS is thought to be auto-immune and auto-immune by definition is your immune system gone into overload, I could have had a virus and what happened next could have been an exacerbation.
My legs are horrible. Just intense tingling and just the tightest feeling I have ever known. Just imagine a rubber band pulled to its breaking point. Just standing for any length of time is pins and needs. Knees and ankles . . . I look like a puppy that's going to grow up to be a big dog. Small legs but big feet just flailing all over the place. The thing with my hands went away and with this came back. My left hand went tingly at the fingertips and worked it's way down. My right hand, something entirely different. If felt like it would if you slapped something really hard. It would itch to no end. So bad that I had to put on a cotton glove so I wouldn't scratch it bloody.
Friday I had my check up with my neurologist. Like a previous post I had, they are the most depressing things when things are going bad. You have to spill your guts about how your body is deteriorating and there's really nothing that can be done except steroids to lessen the inflammation.
The outcome: The prednisone by tablet doesn't seem to really work for you so lets do the Solumedrol followed by a prednisone taper. Since I was due for an MRI, lets do cranium, cervical, and thoracic. Also, we might start thinking about changing meds. Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market.
Starting Monday, I'll have a new catheter and an IV bag a day ending on Friday, followed by 20 days of tablets. Thursday I get to sit in the MRI drum for 4 hours since they are doing all three areas at once and since it's with contrast, I get to come home and then do an IV bag. But no biggie, I'm on steroids, I'll be wired for the next month. With the remaining question: Will it do any good?
Sometimes I don't know whether I want to shout or cry. Most of the time I just keep on keeping on.
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