21st January 2008
Cozican, if I may butt in..
Oral Steroids, especially the Dose Pack are SO low that they probably arent doing you any good. When you take a dose pack of 4 mg prendisone (even when you take 5 of them or 20 mgs) you are getting such a tiny dose. The IV steroids are 1000 mgs a shot- usually for 5 days. No wonder you felt so much better when you had IV Steroids in the hospital....
There is another side to this. IV Steroids are dangerous when over -used. My Neuro considers overuse more than 3 times in a year....he prefers to administer it as little as possible, however we all know that they do help overall symtoms. So, with that said, doctors are normally reluctant to put you on IV Steroids until things become really bad.
I do know the feeling of wondering if you should have been diagnosed with a more progressive form of MS. Its scary, isnt it? Usually though, doctors do NOT mess up on this. Its pretty obvious depending on how fast you are diagnosed, what caused you to be diagnosed (number and placement of lesions vs. Obands in Spinal Tap or even other neurological tests) how progressive your MS really is.....it CAN change for some people, but not usually overnight or even as quickly as August, when you said you were diagnosed..when I started Rebif alittle over a year ago, I was POSITIVE that I was getting worse the first 3 months. It turned out, that I wasnt, even though I had 3 relapses in the first 6 months....now, at month 15, I can honestly say that Rebif made me feel so much more like me - Im glad I stuck with it. Generally, all DMDs take about 6 months to really build up in your bloodstream- that being said, you are almost hitting that point now. Its possible that Copaxone isnt the drug of choice for you- that maybe one of the interferons would be better (Avonex, Rebif, or Betaseron). The best thing for you to do is have another MRI at your 6 month mark, ask for it at your doctors appt in Feb- and see what has changed since you started the meds. Request that they do it with contrast, so that you can see what is actively going on...it might explain any relapse type symptoms you are describing- it might also show that nothing has changed and much of this is getting used to the medicine....if you are really that unhappy, you can discuss a change of meds at that time- however without the MRI, youre not going to be able to prove or disprove whether or not your MS is progressing...
I wish you luck. Its a horrible place that you are in with your business and disability issues. Many people do not get disability the first time around, and I would strongly consider consulting a lawyer to find out the best way to ensure that you do, if thats the route you really want to go. Again, much luck and feel better soon.
Nikki
Oral Steroids, especially the Dose Pack are SO low that they probably arent doing you any good. When you take a dose pack of 4 mg prendisone (even when you take 5 of them or 20 mgs) you are getting such a tiny dose. The IV steroids are 1000 mgs a shot- usually for 5 days. No wonder you felt so much better when you had IV Steroids in the hospital....
There is another side to this. IV Steroids are dangerous when over -used. My Neuro considers overuse more than 3 times in a year....he prefers to administer it as little as possible, however we all know that they do help overall symtoms. So, with that said, doctors are normally reluctant to put you on IV Steroids until things become really bad.
I do know the feeling of wondering if you should have been diagnosed with a more progressive form of MS. Its scary, isnt it? Usually though, doctors do NOT mess up on this. Its pretty obvious depending on how fast you are diagnosed, what caused you to be diagnosed (number and placement of lesions vs. Obands in Spinal Tap or even other neurological tests) how progressive your MS really is.....it CAN change for some people, but not usually overnight or even as quickly as August, when you said you were diagnosed..when I started Rebif alittle over a year ago, I was POSITIVE that I was getting worse the first 3 months. It turned out, that I wasnt, even though I had 3 relapses in the first 6 months....now, at month 15, I can honestly say that Rebif made me feel so much more like me - Im glad I stuck with it. Generally, all DMDs take about 6 months to really build up in your bloodstream- that being said, you are almost hitting that point now. Its possible that Copaxone isnt the drug of choice for you- that maybe one of the interferons would be better (Avonex, Rebif, or Betaseron). The best thing for you to do is have another MRI at your 6 month mark, ask for it at your doctors appt in Feb- and see what has changed since you started the meds. Request that they do it with contrast, so that you can see what is actively going on...it might explain any relapse type symptoms you are describing- it might also show that nothing has changed and much of this is getting used to the medicine....if you are really that unhappy, you can discuss a change of meds at that time- however without the MRI, youre not going to be able to prove or disprove whether or not your MS is progressing...
I wish you luck. Its a horrible place that you are in with your business and disability issues. Many people do not get disability the first time around, and I would strongly consider consulting a lawyer to find out the best way to ensure that you do, if thats the route you really want to go. Again, much luck and feel better soon.
Nikki