Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Hi....my middle daughter, Emmy, has had MS for (at least) three years, and after using the first line drugs has not gone into remission. In fact, we saw her MS specialist this week, and she showed us her MRI...Em has now developed a large, plum-sized lesion on her brain (besides many small lesions on her brain and her spine.) The Dr is encouraging her to try Tysabri, but with huge caveats. There is a risk of contracting a brain infection called PML, I believe. The biggest issue is that there is as of now NO treatment for PML. If you get it there is severe disability or death. Em is leaning toward not using Tysabri and we are investigating new drugs on the horizon and natural remedies. I know there are differences, but as autoimmune diseases there is some overlapping of medications between RA and MS. As this is a RA group, if you have any ideas or suggestions perhaps we could talk off this group? Em already has several challenges including a learning disability and emotional issues. She is 32. I would so love your prayers for her as well. Thanks, Cheryle in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Wow, Cheryle. My prayers go out to you and your daughter. I know how scary this is as my oldest daughter also has MS as does a dear friend of mine in Arkansas. Her emotional and learning disabilities could be directly related to the MS too depending on where the lesions are on her brain. Both my daughter and my friend have gone through the interferon's with little to no success. My daughter's doctor wants to try her on cytoxin next, but she is hesitant. My friend's MS is very severe and after 2 years of Novantrone, she is taking Methotrexate and Cytoxan with fairly good results. There's a group in the UK: http://www.msrc.co.uk/index.cfm?fuseaction=show & pageid=2944 that is researching the possibility of MS being linked to a Chronic cerebrospinal venous insufficiency. Its very interesting, but almost seems too simple of an explanation. I wish you both all the luck in the world. Read 's post on Tysabri: /message/134933 I think I would be extremely hesitant to use it as well. Off the top of my head (which is extremely fogged), the MTX seems to be the only overlapping med that I'm aware of. Keeping you and your family in my prayers. I know this is not an easy road to travel. Auto-Immune Disorders are (IMHO) almost more illusive with successful treatments than cancer would be..... Doreen Hi....my middle daughter, Emmy, has had MS for (at least) three years, and after using the first line drugs has not gone into remission. In fact, we saw her MS specialist this week, and she showed us her MRI...Em has now developed a large, plum-sized lesion on her brain (besides many small lesions on her brain and her spine.) The Dr is encouraging her to try Tysabri, but with huge caveats. There is a risk of contracting a brain infection called PML, I believe. The biggest issue is that there is as of now NO treatment for PML. If you get it there is severe disability or death. Em is leaning toward not using Tysabri and we are investigating new drugs on the horizon and natural remedies. I know there are differences, but as autoimmune diseases there is some overlapping of medications between RA and MS. As this is a RA group, if you have any ideas or suggestions perhaps we could talk off this group? Em already has several challenges including a learning disability and emotional issues. She is 32. I would so love your prayers for her as well. Thanks, Cheryle in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Cheryle, Em is in my prayers. I hope she finds a safe next step. It is OK to discuss MS on the list. Not an MD On Sat, Feb 6, 2010 at 8:34 PM, <mercycove@...> wrote: > > > > > > Hi....my middle daughter, Emmy, has had MS for (at least) three years, and after using the first line drugs has not gone into remission. In fact, we saw her MS specialist this week, and she showed us her MRI...Em has now developed a large, plum-sized lesion on her brain (besides many small lesions on her brain and her spine.) The Dr is encouraging her to try Tysabri, but with huge caveats. There is a risk of contracting a brain infection called PML, I believe. The biggest issue is that there is as of now NO treatment for PML. If you get it there is severe disability or death. Em is leaning toward not using Tysabri and we are investigating new drugs on the horizon and natural remedies. > > > > I know there are differences, but as autoimmune diseases there is some overlapping of medications between RA and MS. As this is a RA group, if you have any ideas or suggestions perhaps we could talk off this group? > > > > Em already has several challenges including a learning disability and emotional issues. She is 32. I would so love your prayers for her as well. > > > > Thanks, > > > > Cheryle in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Have you read these studies? Em Is in my prayers, Kate f http://ms.about.com/gi/o.htm?zi=1/XJ & zTi=1 & sdn=ms & cdn=health & tm=25 & f=00 & tt=2 & bt=\ 0 & bts=0 & zu=http%3A//clinicaltrials.gov/ct2/show/NCT00645749%3Fterm%3Dhelminth%2b\ ms%26rank%3D1 Sent from my iPhone On Feb 6, 2010, at 8:34 PM, mercycove@... wrote: Hi....my middle daughter, Emmy, has had MS for (at least) three years, and after using the first line drugs has not gone into remission. In fact, we saw her MS specialist this week, and she showed us her MRI...Em has now developed a large, plum-sized lesion on her brain (besides many small lesions on her brain and her spine.) The Dr is encouraging her to try Tysabri, but with huge caveats. There is a risk of contracting a brain infection called PML, I believe. The biggest issue is that there is as of now NO treatment for PML. If you get it there is severe disability or death. Em is leaning toward not using Tysabri and we are investigating new drugs on the horizon and natural remedies. I know there are differences, but as autoimmune diseases there is some overlapping of medications between RA and MS. As this is a RA group, if you have any ideas or suggestions perhaps we could talk off this group? Em already has several challenges including a learning disability and emotional issues. She is 32. I would so love your prayers for her as well. Thanks, Cheryle in Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Prayers assured. And I hope you find answers you are seeking. M > > > > > > > Hi....my middle daughter, Emmy, has had MS for (at least) three years, and after using the first line drugs has not gone into remission. In fact, we saw her MS specialist this week, and she showed us her MRI...Em has now developed a large, plum-sized lesion on her brain (besides many small lesions on her brain and her spine.) The Dr is encouraging her to try Tysabri, but with huge caveats. There is a risk of contracting a brain infection called PML, I believe. The biggest issue is that there is as of now NO treatment for PML. If you get it there is severe disability or death. Em is leaning toward not using Tysabri and we are investigating new drugs on the horizon and natural remedies. > > > > I know there are differences, but as autoimmune diseases there is some overlapping of medications between RA and MS. As this is a RA group, if you have any ideas or suggestions perhaps we could talk off this group? > > > > Em already has several challenges including a learning disability and emotional issues. She is 32. I would so love your prayers for her as well. > > > > Thanks, > > > > Cheryle in Oregon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Cheryle - I've had several close friends having been diagnosed w/ MS. Just a personal note & message to you -please be aware of the high rate of depression in MS patients. For many years - I helped sponsor a bike a thon to raise $$ in Charlotte NC for the MS Society - please please! Watch the signs not just for depression but for suicide as well. I'm not trying to bring you down but I've been exposed 2 a lot of MS patients & these things are so often overlooked. Feel free to email me directly! in SC Sent from my iPhone On Feb 8, 2010, at 3:25 PM, " tango.dream " <tango.dream@...> wrote: Prayers assured. And I hope you find answers you are seeking. M > > > > > > > Hi....my middle daughter, Emmy, has had MS for (at least) three years, and after using the first line drugs has not gone into remission. In fact, we saw her MS specialist this week, and she showed us her MRI...Em has now developed a large, plum-sized lesion on her brain (besides many small lesions on her brain and her spine.) The Dr is encouraging her to try Tysabri, but with huge caveats. There is a risk of contracting a brain infection called PML, I believe. The biggest issue is that there is as of now NO treatment for PML. If you get it there is severe disability or death. Em is leaning toward not using Tysabri and we are investigating new drugs on the horizon and natural remedies. > > > > I know there are differences, but as autoimmune diseases there is some overlapping of medications between RA and MS. As this is a RA group, if you have any ideas or suggestions perhaps we could talk off this group? > > > > Em already has several challenges including a learning disability and emotional issues. She is 32. I would so love your prayers for her as well. > > > > Thanks, > > > > Cheryle in Oregon > > Quote Link to comment Share on other sites More sharing options...
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