Guest guest Posted August 30, 2010 Report Share Posted August 30, 2010 TY for all the thoughts and support. I am 47 and prob. have had MS for longer than I have been dx'd. I am going to a MS Center in Kansas City and I like them very much. Essentially I had a normal MRI-brain 2 yrs ago, now I have multiple lesions in brain and spine. I was told at last visit that it is possible that I have a virilent (sp) form of MS. So what do u do with that info-in my head I want to live my life as normal as I can for as long as I can. Being so sick I am in bed 6 out 7 days of the week doesn't fit that "living my life" formula. I know I will have to have tratment I am just considerinbg postponing it for a bit. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2010 Report Share Posted August 30, 2010 I'm so sorry you are having such a hard time. Did they treat you with solumedrol?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Mon, August 30, 2010 6:37:04 AMSubject: Treatment TY for all the thoughts and support. I am 47 and prob. have had MS for longer than I have been dx'd. I am going to a MS Center in Kansas City and I like them very much. Essentially I had a normal MRI-brain 2 yrs ago, now I have multiple lesions in brain and spine. I was told at last visit that it is possible that I have a virilent (sp) form of MS. So what do u do with that info-in my head I want to live my life as normal as I can for as long as I can. Being so sick I am in bed 6 out 7 days of the week doesn't fit that "living my life" formula. I know I will have to have tratment I am just considerinbg postponing it for a bit. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2010 Report Share Posted August 31, 2010 Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2010 Report Share Posted August 31, 2010 Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2010 Report Share Posted September 1, 2010 I agree with Reb.. Copaxone won't make you sick.. though you do have to do a needle every day.. and it might sting (like a bee sting) for a few minutes... might leave a welt, might even leave a bruise for a short time.. I hit a stretch mark in my leg on day 2.. and three days later it still feels bruised.. Copaxone has been on the market the longest of all.. no real harmful side effects.. and there are statistics out that say that more than 50% of people on Copaxone for 10 years or longer are still walking unassisted.. Don't give up on treatment.. HUGS |)onna Wow. 2 flares since february this year, that's a lot! Considering that, and the severe effect Rebif has had on your liver etc., I would say that it's quite clear that Rebif isn't working for you. Which seems to be the doctor's conclusion as well. That's the thing with the MS-drugs (as well as most other drugs, for that matter, but perhaps especially these disease modifying ones), they work differently for/with different individuals. That's why you'll often need to do a little trial and error after your dx, and also why you need to do regular check ups. Now, that Rebif worked that badly for you really doesn't mean that Copaxone will, it's a whole other drug, with a whole other mechanism. I would strongly recommend you to at least try out the Copaxone before you make the decision to stay off MS-drugs. Your MS seems to be very active (2 flares in just 6 months), and really could do some serious damage if left to its own devices. Not trying to put a damper on your spirit, just wanting you to be as healthy as possible for as long as possible! love /Reb - in Sweden ----original message---- Hello-I am Sherri, I have only posted here once before but I do read the posts, and appreciate the info and education shared here. I was dx'd in Feb 2010 and have had 2 flares, and 2 rounds of steroids since the first one. I was put on Rebif and have been basically sick every since. Two weeks ago due to Liver and tyroid panel problems and a allergic type reaction I was taken off the Rebif for a "drug vacation" and to see if my abnormal blood work would normalize. The Dr's plan is to repeat blood this week and than start me on Copaxone (sp). I am working on developing my own plan, and am seriously considering no treatment for now. I am curious if anyone one else has opted for that decision? I am sick of feeling sick! S. Quote Link to comment Share on other sites More sharing options...
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