Good job ManU in the 2-0 win over Inter and Ronaldo scored a goal in a big game. Shut up critics.
I had my "check up" with the neurologist today. She was pleasantly surprised that the steroids helped as much as they did. I still have some spacicity in my legs but nothing compared to two to months ago. Back then just image pulling a rubber band as tight as possible and trying to do something with it.
I've been searching for the proper phrase and I think it's irony. Her concern is that my exacerbation's are on my spinal cord rather than other places in my CNS. Is there any good spot to have an exacerbation? Anyway there were two small spots on my T6 that would explain the symptoms for this last go around. Given that fact that's where the myelitis is/was: no kidding those are consistent symptoms.
We are changing meds though: Copaxone. Thankfully, I won't have to go through the months of flu like symptoms and will have to worry site reactions and shooting up every day. We did talk about some of the new meds on the horizon. As usual with anything in the states it takes forever for the FDA to give approval so right now looks like 18 months minimum before it gets to market.
There's a couple oral drugs but nothing particular on if its in conjunction with another drug or taken singly. There's a drug that will help with walking that can be taken in conjunction with other meds. Another infusion that's taken once a year that is supposed to reduce exacerbation's by 80%. Nothing definitive on that yet.
I go back in 4 months unless something changes.
12 March 2009
09 March 2009
Awareness
Last week was National Awareness Week. Refer to last years post for my thoughts.
I'm working out a little bit more and more. It's still taxing on my energy though. I can fight through most of it. Sometimes. I had to work at my dad's on Saturday and it sucked me dry. Had to take a nap. I was okay the next day. Maybe my endurance is growing.
I have my follow up appointment this coming Thursday. Refer to another entry for my thoughts on these delightful visits.
But such is the life that we lead.
On to a lighter note : Go ManU beat Inter.
I'm working out a little bit more and more. It's still taxing on my energy though. I can fight through most of it. Sometimes. I had to work at my dad's on Saturday and it sucked me dry. Had to take a nap. I was okay the next day. Maybe my endurance is growing.
I have my follow up appointment this coming Thursday. Refer to another entry for my thoughts on these delightful visits.
But such is the life that we lead.
On to a lighter note : Go ManU beat Inter.
25 February 2009
Two weeks and counting
I've been off the 'roids for almost two weeks. I've worked out a couple times since then. Would have worked out more, but as usual, my back decided to remind me that I still have to deal with it every now and again. It didn't totally go out. Just felt like somebody punched me in the back.
I figured I must really have MS because after the first time I worked out, I wasn't exhausted, but I did fall asleep watching TV. Closed my eyes and all of a sudden it was an hour later. The rest of the symptoms . . . while not as good as when I was on steroids, it's manageable and I can deal with it.
More to come later.
I figured I must really have MS because after the first time I worked out, I wasn't exhausted, but I did fall asleep watching TV. Closed my eyes and all of a sudden it was an hour later. The rest of the symptoms . . . while not as good as when I was on steroids, it's manageable and I can deal with it.
More to come later.
15 February 2009
Remember, Remember
Been off the steroids for three days. So far . . . okay. Not 100% nor will ever be but I'm living with it. On my left hand, the tips of my little and ring finger get a little tingly and my right hand while not as bad as it was still has the swollen feeling, but so far hit hasn't gotten stiff like before. Legs and everything are better than they were and are actually manageable. I'm walking faster, my balance is better. I actually wore shoes that weren't running shoes. Although, long socks was still like sliding on razor blades and after a while, the shoes were like walking on hot glass shards.
Steroids do wonders but 25 days on limited sleep and super appetite leave a lot to be desired. Thursday was the last tablet. Friday night I didn't crash, Saturday on the other hand . . . I think I was asleep longer than I was awake. It took me 12 hours to do 3 loads of laundry. Two naps that went over two hours plus a decent nights sleep and then going to bed early.
All in all, I feel better than have since September. The sad part is that I guess this is probably as good as it's ever going to get. People say do be so pessimistic, but I'm just being pragmatic. You can't change the damage that's already been.
Steroids do wonders but 25 days on limited sleep and super appetite leave a lot to be desired. Thursday was the last tablet. Friday night I didn't crash, Saturday on the other hand . . . I think I was asleep longer than I was awake. It took me 12 hours to do 3 loads of laundry. Two naps that went over two hours plus a decent nights sleep and then going to bed early.
All in all, I feel better than have since September. The sad part is that I guess this is probably as good as it's ever going to get. People say do be so pessimistic, but I'm just being pragmatic. You can't change the damage that's already been.
26 January 2009
As if it was going to be a suprise
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.
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.
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.
08 December 2008
The year in review
This is how much shooting up becomes a normal part of your life: I started shooting up a year ago last week and didn't even remember. It's been 156 injections, 13 boxes of syringes, and if I didn't have insurance, around $29,000 just for the shots, five months of knocking myself out to make sure I slept through the aches, chills, and pounding headaches, two months of steroids, 5 days of an IV bag, 3 hours in the MRI machine.
Where am I know? Probably worse off than before. Add a new sensation of the tips of my fingers getting all tingly. What fun. Everyone should join in it. Everything I read and the word on the street is that it's an individuals disease: nobody is the same. One of the underlying symptoms that everyone seems to have though is bouts of tiredness. I can say I've never had it. Sure, I've needed naps from to little sleep, but never from exercise or just living life.
Is all this the MS or is it the myelitis.
I let somebody shoot me up this weekend. She's studying to be a nurse, so a little practical experience wouldn't hurt. It was leg day so no matter what she did it wouldn't hurt to bad. She was a little enthusiastic with the insertion. Since there's very little fatty tissue on my legs, she got it a little more in the muscle than I usually do. No big deal. Just felt like I got punched. I would recommend that we all let somebody inject us. I don't have a problem injecting myself, but when someone else does it, it doesn't quite hurt as bad. With drug trials for pill form, injections will be a thing of the past. Not for a few years though: FDA approval and then the insurance company covering it.
Always a happy thought. Our well being is contingent on whether or not somebody else will sign off on it.
Where am I know? Probably worse off than before. Add a new sensation of the tips of my fingers getting all tingly. What fun. Everyone should join in it. Everything I read and the word on the street is that it's an individuals disease: nobody is the same. One of the underlying symptoms that everyone seems to have though is bouts of tiredness. I can say I've never had it. Sure, I've needed naps from to little sleep, but never from exercise or just living life.
Is all this the MS or is it the myelitis.
I let somebody shoot me up this weekend. She's studying to be a nurse, so a little practical experience wouldn't hurt. It was leg day so no matter what she did it wouldn't hurt to bad. She was a little enthusiastic with the insertion. Since there's very little fatty tissue on my legs, she got it a little more in the muscle than I usually do. No big deal. Just felt like I got punched. I would recommend that we all let somebody inject us. I don't have a problem injecting myself, but when someone else does it, it doesn't quite hurt as bad. With drug trials for pill form, injections will be a thing of the past. Not for a few years though: FDA approval and then the insurance company covering it.
Always a happy thought. Our well being is contingent on whether or not somebody else will sign off on it.
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