tag:blogger.com,1999:blog-3500936220214961312.post8817529945579233835..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Tysabri-PML Cases as of March 1, 2012Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-3500936220214961312.post-10768367755770933892014-09-30T14:53:51.493-04:002014-09-30T14:53:51.493-04:00I forgot to mention, I myself also have MS, and ha...I forgot to mention, I myself also have MS, and have been on Tysabri for 2 and 1/2 years. I am JCV negative, and (knock on wood) hopefully will remain so. My neuro says that generally if you are JCV negative, the chances are lower of becoming positive. He told me to wear a mask when cleaning catboxes or toilets. The aforementioned boyfriend was on Tysabri for FIVE YEARS, and although JCV positive didn't get PML. Of course statistically the chances of getting PML are still very low even if you are JCV positive, but to stay on it for 5 years did seem a bit to be tempting fate. His neuro was encouraging him to remain on it, but he didn't feel comfortable with continuing, so he has switched to Aubagio.Rylin Marielhttps://www.blogger.com/profile/00717489752640047555noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-55003258349910476582012-03-31T19:43:13.707-04:002012-03-31T19:43:13.707-04:00Hi Lisa,
Thanks for sharing your story. Sorry to...Hi Lisa,<br /><br />Thanks for sharing your story. Sorry to hear that you lost your job due to MS. I hope that you are able to find a way to get the MS treatments you want and need at the appropriate time.<br /><br />Three MS patients in one family. Yes, that does seem to be a lot. wow. Hope you are doing well.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-57107315014537600342012-03-22T21:54:06.480-04:002012-03-22T21:54:06.480-04:00I only take only one drug for the MS headacheas.Wh...I only take only one drug for the MS headacheas.When I was diagnosed in Dec 03 my neurologist at the time said I had the highest count of any of his other MS patients.(the protein count) I lost him as a doc in 04,after he put me off work at the hospital where we both worked,numerous MRI's I was to high cost patient for THEIR insurance,lololo So now I take supplements(herbs) and glad to say I am glad I have.I am haivng issues with walking now,but at least I am alive,such as it is.Thank you for posting this,answers questions my huband and I talked about just today.And trust me MS patients are the most overlooked patients.I have a cousin who has suffered with it for yrs and lost another one who had MS last yr,odd isn't it,3 of us in the same family,Anonymoushttps://www.blogger.com/profile/03034703902288086786noreply@blogger.com