Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 Hope everyone is well and 2011 is going in the direction you want! I was trying to catch up on some posts today to see how some of you are doing. Hi Akiba, Sharon and all others *wave** 'm still doing great on Tysabri, however, my neuro is getting kinda nervous about the length of time I've been on it now. I'm hesitant to go off it because I have had such good luck. I have some unexplained flank plain (more annoying than painful)for almost two years, which I'm sure is my $%$# bladder but my neuro is recommending me to go to the Mayo clinic as they have done everything locally to figure it out. At this time, he wants me to also consult with the MS's dr's at the mayo regarding Tysabri and new drugs. ugh. Why change what works, is all I can think.... I do have a Tysabri question for any Tysabri users....Anyone get strange skin things since being on the drug? Rashes, moles and fungus? Mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 Wow---it's Mindy!!!! What a surprise to see you pop up in my email. I am glad to hear from you and know you are doing well. What ever happened with the boss who was giving you problems? I can't answer about Tysabri because I've never been on it. Shalonda is just getting ready to start it. I hope she is going to have the same great results you and Kate had with it.How's you weather? Nice and balmy? lolhugs 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: Fri, January 28, 2011 9:08:08 AMSubject: Hi Guys!Hope everyone is well and 2011 is going in the direction you want!I was trying to catch up on some posts today to see how some of you are doing. Hi Akiba, Sharon and all others *wave** 'm still doing great on Tysabri, however, my neuro is getting kinda nervous about the length of time I've been on it now. I'm hesitant to go off it because I have had such good luck. I have some unexplained flank plain (more annoying than painful)for almost two years, which I'm sure is my $%$# bladder but my neuro is recommending me to go to the Mayo clinic as they have done everything locally to figure it out. At this time, he wants me to also consult with the MS's dr's at the mayo regarding Tysabri and new drugs. ugh. Why change what works, is all I can think....I do have a Tysabri question for any Tysabri users....Anyone get strange skin things since being on the drug? Rashes, moles and fungus? Mindy------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 Gee, Mindy, I'd be very concerned about 'skin' things and get thyself to a skin doc. Can't remember what they're called. duh. Anyway, never had that when I was on Ty, and the reason they want you off is cuz you're not supposed to be on it in excess of 3 years. I think the reasoning is, it increases your chance of PML. At least that is what I believe. I'm back on Copaxone and holding me own.You don't have a kidney stone, do you? I had terrible flank pain when I had one. Worth looking into I suppose. Take care, hugs, KateTo: MSersLife Sent: Fri, January 28, 2011 11:08:08 AMSubject: Hi Guys! Hope everyone is well and 2011 is going in the direction you want! I was trying to catch up on some posts today to see how some of you are doing. Hi Akiba, Sharon and all others *wave** 'm still doing great on Tysabri, however, my neuro is getting kinda nervous about the length of time I've been on it now. I'm hesitant to go off it because I have had such good luck. I have some unexplained flank plain (more annoying than painful)for almost two years, which I'm sure is my $%$# bladder but my neuro is recommending me to go to the Mayo clinic as they have done everything locally to figure it out. At this time, he wants me to also consult with the MS's dr's at the mayo regarding Tysabri and new drugs. ugh. Why change what works, is all I can think.... I do have a Tysabri question for any Tysabri users....Anyone get strange skin things since being on the drug? Rashes, moles and fungus? Mindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 Hey Sharon, Once in a while I come in here and lurk but fb seems to take up most of my time these days. lol. not sure if that's good or bad. My employer is still being a pain in the bejesus. I'm thinking about creating an employer specific training regarding " chronic illness in the workplace " . People have no clue that what is here today may be gone tomorrow with some issues.....ugh the drama. Someday I will have to tell you about it. Or maybe you will see me in the news after I sue them and donate the money to the MSAA. lol.. Mindy > > Wow---it's Mindy!!!! What a surprise to see you pop up in my email. I am glad > to hear from you and know you are doing well. What ever happened with the boss > who was giving you problems? I can't answer about Tysabri because I've never > been on it. Shalonda is just getting ready to start it. I hope she is going to > have the same great results you and Kate had with it. > > How's you weather? Nice and balmy? lol > > hugs > > > Sharon > This 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: Fri, January 28, 2011 9:08:08 AM > Subject: Hi Guys! > > Hope everyone is well and 2011 is going in the direction you want! > > I was trying to catch up on some posts today to see how some of you are doing. > Hi Akiba, Sharon and all others *wave** > > 'm still doing great on Tysabri, however, my neuro is getting kinda nervous > about the length of time I've been on it now. I'm hesitant to go off it > because I have had such good luck. > > > I have some unexplained flank plain (more annoying than painful)for almost two > years, which I'm sure is my $%$# bladder but my neuro is recommending me to go > to the Mayo clinic as they have done everything locally to figure it out. At > this time, he wants me to also consult with the MS's dr's at the mayo regarding > Tysabri and new drugs. ugh. Why change what works, is all I can think.... > > I do have a Tysabri question for any Tysabri users....Anyone get strange skin > things since being on the drug? Rashes, moles and fungus? > > > Mindy > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 Hey Kate, I did go to the dermatologist and he said it was called something keratosis and people get them as they age. But they don't normally get them on their upper thighs and knees...lol....it's normally on the face and neck. But they are grouped and gray and scaley and spreading...they are ICKY!! I want them gone! lol I actually had a lithoscopy last year to break up a suspected kidney stone and all that happened is now I'm extremeley itchy in that spot as well. I'm sure it's my nerves reacting to the procedure. I just recently had my gallbladder tested and was sure we found the problem because they were able to recreate the sytomps during the test. However,....bad news...the tests were considered normal. go figure. about Tysabri...some have been on it for almost four years. i will be three in March and I'm thinking I will finish up this year or go off when I get done with school. How long were you on Tysabri? > > Gee, Mindy, I'd be very concerned about 'skin' things and get thyself to a skin > doc. Can't remember what they're called. duh. Anyway, never had that when I was > on Ty, and the reason they want you off is cuz you're not supposed to be on it > in excess of 3 years. I think the reasoning is, it increases your chance of PML. > At least that is what I believe. I'm back on Copaxone and holding me own. > You don't have a kidney stone, do you? I had terrible flank pain when I had one. > Worth looking into I suppose. Take care, hugs, Kate > > > > > ________________________________ > > To: MSersLife > Sent: Fri, January 28, 2011 11:08:08 AM > Subject: Hi Guys! > > > Hope everyone is well and 2011 is going in the direction you want! > > I was trying to catch up on some posts today to see how some of you are doing. > Hi Akiba, Sharon and all others *wave** > > 'm still doing great on Tysabri, however, my neuro is getting kinda nervous > about the length of time I've been on it now. I'm hesitant to go off it > because I have had such good luck. > > > I have some unexplained flank plain (more annoying than painful)for almost two > years, which I'm sure is my $%$# bladder but my neuro is recommending me to go > to the Mayo clinic as they have done everything locally to figure it out. At > this time, he wants me to also consult with the MS's dr's at the mayo regarding > Tysabri and new drugs. ugh. Why change what works, is all I can think.... > > I do have a Tysabri question for any Tysabri users....Anyone get strange skin > things since being on the drug? Rashes, moles and fungus? > > > Mindy > Quote Link to comment Share on other sites More sharing options...
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