Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 There is ALWAYS hope, Rose! I think seeing another neurologist would be the first step. One said "inject" the other said "no" so why not see what a third will say! There are choices now in injectables that may work well for her. There is also an oral medication now for MS called Gilenya. I hear it is expensive but it is an option. I was on Avonex for 5 years and did well on it. I had side effects but they were bad--just a day or two a week of feeling "down". There is also Copaxone and it doesn't give side effects for the most part.Please let us know what your sister does and how she is getting along. Does she have internet so she can join in with the group too?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: Wed, June 1, 2011 6:41:22 AMSubject: Is There Hope?Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Ten years ago the injections were fairly new, and there was not the long-term experience of them we have today. I'd think that was the reason the second dr gave a more reserved advise. Today we know that the effect of those drugs are just as much about preventing future symptoms as they are about reducing already developed symptoms. But we can only speculate about what would have happened if your sister had been given better, or more consistent, advise 10 years ago. What's more important is what can be done today, and yes, there are options! I don't know if her MS is progressive or if it's Relapsing-Remitting, but there are medication that might improve life for her in either case. Apart from the injections, there are also, for instance, Tysabri (infusions, I think), that is known to have good effect even on progressive MS. I don't have any experience of Tysabri, but I know there are others in this group that have.And like Sharon said, there's always hope.Best of luck to you and your sisterlove/Reb>> Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 I am sorry to hear about your sister. I will keep her in my prayers. Hugs nne To the world you might be one person, but to one person you just might be the world " " May the Lord Bless you and keep you, May the Lord Make his face shine upon you, and give you Peace...Forever " Breast Cancer Patients Soul Mates for Life http://breastcancerpatientssoulmatesforlife.bravehost.com/ Anxiety Depression and Breast Cancer http://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancer Angel Feather Loomer www.angelfeatherloomer.blogspot.com The Cancer Club www.cancerclub.com > Is There Hope? > > Hi everyone. My sixty-one year old sister was diagnosis with MS about > ten years ago. One neurologist suggested she should begin inject able > medication. A " second-opinion " neurologist stated that the side effects > from the medication are worse than her problems then. Her MS has now > progressed to where she now needs assistance to walk, get dress, take a > shower, or go to the bathroom. She has limited control of her right leg > and arm, which are also painful. Her speech, at times, is slurred. She > has vision and hearing problems, as well as, incontinence. Considering > her age, does anyone have experience with any type of medication that > will " improve " her problems? I know there is no cure for MS; however, is > there any hope she could improve with medication. Thanks, Rose ____________________________________________________________ FREE 3D MARINE AQUARIUM SCREENSAVER - Watch dolphins, sharks & orcas on your desktop! Check it out at http://www.inbox.com/marineaquarium Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 the interferons are suppose to help heal some as well as prevention aren't they? copaxone doesn't offer that from what I understand. Aren't a couple of you on one of the orals that have enabled you to become more mobile? It is a hard decision...I was contemplating about going back to the interferons because the copaxone shots are just about as disturbing as the side effects of avonex albeit different in nature...hard to decide as we tend to not recall quite how miserable something was before when comparing to a current issue. I'm just about through 3 months and find all the injection sight issues really suck. Cannot even imagine after a year let alone 6 years that I had avonex. sigh. I do hope you can find something to make her quality of life better! sometimes the side effects are a fair trade off it seems.DeeTo: MSersLife Sent: Wed, June 1, 2011 11:03:19 AMSubject: Re: Is There Hope? There is ALWAYS hope, Rose! I think seeing another neurologist would be the first step. One said "inject" the other said "no" so why not see what a third will say! There are choices now in injectables that may work well for her. There is also an oral medication now for MS called Gilenya. I hear it is expensive but it is an option. I was on Avonex for 5 years and did well on it. I had side effects but they were bad--just a day or two a week of feeling "down". There is also Copaxone and it doesn't give side effects for the most part.Please let us know what your sister does and how she is getting along. Does she have internet so she can join in with the group too?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: Wed, June 1, 2011 6:41:22 AMSubject: Is There Hope?Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Thanks for all your replies and kind thoughts. I was hoping that after ten years there would now be a special drug that would help her. Rose > > Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A " second-opinion " neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will " improve " her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 There might be something a good neuro could give her. I am not up on all the MS drugs at this time--something new comes out regularly. Maybe Tysabri would be right for your sis. There is also a drug that helps with walking and stamina. At the moment I can't think of the name of it but I know several members are on this drug. I keep thinking Donna is on it. Donna??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: Thu, June 2, 2011 6:18:26 AMSubject: Re: Is There Hope? Thanks for all your replies and kind thoughts. I was hoping that after ten years there would now be a special drug that would help her. Rose>> Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose>------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 Dee, I'm taking Copaxone.. and still remember the 4 years of Avonex and having the flu symptoms every week.. And yes, I still have site reactions after, soon to be 5 years, on the Copaxone.. but even if I couldn't take the Copaxone any more I wouldn't go back to the interferons.. I don't know that Copaxone doesn't offer some healing.. though they can't "advertise" that it does, because it "wasn't part of the original study".. I went from using a cane to walking unassisted, then running (well not "running") up and down stairs several times a day three days a week, (last week of the month was all five days of the work week).. until the fall that messed up my knees.. the fall was MS related of course, but the damage to the knees was fall related not MonSter induced... I'm now taking Ampyra along with the Copaxone (and all the other cornucopia of drugs) and am finding my mobility definitely improving.. even if I feel like I was "rode hard & put away wet" (as puts it).. after strenuous activity.. but I am climbing into the bathtub under my own power without the transfer device.. and I am able to stand at the kitchen sink for a few minutes to wash a couple dishes.. and I CAN, with the assistance of my walker, get myself OUT to the car and back into the house for excursions.. I expect, with continued exercise (and harassment from my son) that things will continue to improve.. But I do have to add, once again.. that if one starts on the Gilenya.. one can't switch to, or ever take Ampyra soooo.... might be wiser to try the Ampyra first.. or maybe even find out if the opposite holds for switching from Ampyra to Gilenya before making a decision on either.. I'm pretty sure that the Gilenya, improves mobility as well as being an oral disease modifying therapy.. whereas Ampyra, doesn't modify the disease progression, but does improve walking ability.. be it speed or ability.. Oh the medications that go along with the MonSter can be just as confusing as the MonSter itself... HUGS |)onna the interferons are suppose to help heal some as well as prevention aren't they? copaxone doesn't offer that from what I understand. Aren't a couple of you on one of the orals that have enabled you to become more mobile? It is a hard decision...I was contemplating about going back to the interferons because the copaxone shots are just about as disturbing as the side effects of avonex albeit different in nature...hard to decide as we tend to not recall quite how miserable something was before when comparing to a current issue. I'm just about through 3 months and find all the injection sight issues really suck. Cannot even imagine after a year let alone 6 years that I had avonex. sigh. I do hope you can find something to make her quality of life better! sometimes the side effects are a fair trade off it seems. Dee From: Sharon To: MSersLife Sent: Wed, June 1, 2011 11:03:19 AM Subject: Re: Is There Hope?  There is ALWAYS hope, Rose! I think seeing another neurologist would be the first step. One said "inject" the other said "no" so why not see what a third will say! There are choices now in injectables that may work well for her. There is also an oral medication now for MS called Gilenya. I hear it is expensive but it is an option. I was on Avonex for 5 years and did well on it.  I had side effects but they were bad--just a day or two a week of feeling "down". There is also Copaxone and it doesn't give side effects for the most part. Please let us know what your sister does and how she is getting along. Does she have internet so she can join in with the group too? 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.   From: Jean To: MSersLife Sent: Wed, June 1, 2011 6:41:22 AM Subject: Is There Hope? Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 I'm here Sharon, but once again behind the times.. And yup.. on both Copaxone and Ampyra (and I've gone into a bit of detail about the Ampyra in previous posts).. My neurologist would NOT give me the Ampyra without me becoming compliant with one of the disease modifying therapies once again.. I asked for Gilenya/Fingolimod instead of the Copaxone (who wouldn't want to take a pill rather than use a needle).. and he gave me a straight out "NO" on the Gilenya.. because of some uncommon side-effect of melanoma, but in my case might not be so uncommon because my dad had/has melanomas -- the first was a wicked one, the current melanomas aren't the wicked types -- so..Copaxone it is.. and once I came into compliance taking it.. he happily got me approved for the Ampyra and got me started.. and... Just into my second month on the Ampyra.. I am walking, with the assistance of a walker, but still under my own power -- to and from the car for shopping or just getting out and about for a bit.. I am getting myself IN the tub, but still using the transfer for getting out.. that's for safety reasons.. vinyl floor and wet feet don't work so well for normal people -- and I found that I was able to actually stand at the kitchen sink to wash up a few dishes the other day.. for at least 3 minutes.. before I had to sit and rest for a bit.. then was able to stand and do a few more after resting.. I also actually got up and was able to get a plate out of the cupboard the other day.. something I haven't been able to do easily for quite awhile now.. So yeah.. they're working.. and I consider myself blessed that they do and as quickly for me as they have.. I guess for most MSers it takes a bit longer.... HUGS |)onna (I am trying to get caught up again.. really I am!) There might be something a good neuro could give her. I am not up on all the MS drugs at this time--something new comes out regularly. Maybe Tysabri would be right for your sis. There is also a drug that helps with walking and stamina. At the moment I can't think of the name of it but I know several members are on this drug. I keep thinking Donna is on it. Donna?? 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. From: Jean To: MSersLife Sent: Thu, June 2, 2011 6:18:26 AM Subject: Re: Is There Hope? Thanks for all your replies and kind thoughts. I was hoping that after ten years there would now be a special drug that would help her. Rose > > Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 One other thing about Gilenya. If you take Gilenya, it's generally not considered to be a good idea down the road to take Tysabri. The risks are much higher for getting PML if you have been on an immunosuppresant before - which is why I'm trying Tysabri before Gilenya. Tina  Dee, I'm taking Copaxone.. and still remember the 4 years of Avonex and having the flu symptoms every week.. And yes, I still have site reactions after, soon to be 5 years, on the Copaxone.. but even if I couldn't take the Copaxone any more I wouldn't go back to the interferons.. I don't know that Copaxone doesn't offer some healing.. though they can't " advertise " that it does, because it " wasn't part of the original study " .. I went from using a cane to walking unassisted, then running (well not " running " ) up and down stairs several times a day three days a week, (last week of the month was all five days of the work week).. until the fall that messed up my knees.. the fall was MS related of course, but the damage to the knees was fall related not MonSter induced... I'm now taking Ampyra along with the Copaxone (and all the other cornucopia of drugs) and am finding my mobility definitely improving.. even if I feel like I was " rode hard & put away wet " (as puts it).. after strenuous activity.. but I am climbing into the bathtub under my own power without the transfer device.. and I am able to stand at the kitchen sink for a few minutes to wash a couple dishes.. and I CAN, with the assistance of my walker, get myself OUT to the car and back into the house for excursions.. I expect, with continued exercise (and harassment from my son) that things will continue to improve.. But I do have to add, once again.. that if one starts on the Gilenya.. one can't switch to, or ever take Ampyra soooo.... might be wiser to try the Ampyra first.. or maybe even find out if the opposite holds for switching from Ampyra to Gilenya before making a decision on either.. I'm pretty sure that the Gilenya, improves mobility as well as being an oral disease modifying therapy.. whereas Ampyra, doesn't modify the disease progression, but does improve walking ability.. be it speed or ability.. Oh the medications that go along with the MonSter can be just as confusing as the MonSter itself... HUGS |)onna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 I didn't know that Tina. Thank you for letting everyone know! 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: Sun, June 5, 2011 12:36:06 PMSubject: Re: Is There Hope? One other thing about Gilenya. If you take Gilenya, it's generally not considered to be a good idea down the road to take Tysabri. The risks are much higher for getting PML if you have been on an immunosuppresant before - which is why I'm trying Tysabri before Gilenya. Tina Dee, I'm taking Copaxone.. and still remember the 4 years of Avonex and having the flu symptoms every week.. And yes, I still have site reactions after, soon to be 5 years, on the Copaxone.. but even if I couldn't take the Copaxone any more I wouldn't go back to the interferons.. I don't know that Copaxone doesn't offer some healing.. though they can't "advertise" that it does, because it "wasn't part of the original study".. I went from using a cane to walking unassisted, then running (well not "running") up and down stairs several times a day three days a week, (last week of the month was all five days of the work week).. until the fall that messed up my knees.. the fall was MS related of course, but the damage to the knees was fall related not MonSter induced... I'm now taking Ampyra along with the Copaxone (and all the other cornucopia of drugs) and am finding my mobility definitely improving.. even if I feel like I was "rode hard & put away wet" (as puts it).. after strenuous activity.. but I am climbing into the bathtub under my own power without the transfer device.. and I am able to stand at the kitchen sink for a few minutes to wash a couple dishes.. and I CAN, with the assistance of my walker, get myself OUT to the car and back into the house for excursions.. I expect, with continued exercise (and harassment from my son) that things will continue to improve.. But I do have to add, once again.. that if one starts on the Gilenya.. one can't switch to, or ever take Ampyra soooo.... might be wiser to try the Ampyra first.. or maybe even find out if the opposite holds for switching from Ampyra to Gilenya before making a decision on either.. I'm pretty sure that the Gilenya, improves mobility as well as being an oral disease modifying therapy.. whereas Ampyra, doesn't modify the disease progression, but does improve walking ability.. be it speed or ability.. Oh the medications that go along with the MonSter can be just as confusing as the MonSter itself... HUGS |)onna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 Hi again to you too Donna! you sound full of energy today~ wonderful. Thank you for your reply to me, is nice to have some interaction even though I read most all the posts. I think copaxone has helped my symptoms as well but get poo-poo'd as though I'm a placebo. It may just be time but I am not 100% convinced of that as my feet stopped hurting and have been able to do decent walks with the dogs this last week. It took me a couple days to realized they were not hurting lol, like when I took the prednesone series. My husband actually would prefer I not go back on interferons either as I complained daily that I was aging so rapidly for someone in my thirties. pathetic, and the memory of that has passed some but imagine it would only take one dose to bring it all back! I had been on allergy shots for a year and all I remembered about the testing is the blocks of needles they use on the back and then the arms for the negatives from those...well I was retested and couldn't imagine how I could have forgotten the pain and crunching sound of 6 blocks being shoved manually in my back! no way am I revisiting that. In fact the shots need to start working soon or I may bail on that program~ told my husband last week when I had the weekly shots that I am really thinking of discontinuing ANY shots as I feel so beaten down by them. boo hoo whine whine. thanks again for sharing, albeit believed to be placebo~ lol.DeeTo: MSersLife Sent: Sun, June 5, 2011 12:33:30 PMSubject: Re: Is There Hope? Dee, I'm taking Copaxone.. and still remember the 4 years of Avonex and having the flu symptoms every week.. And yes, I still have site reactions after, soon to be 5 years, on the Copaxone.. but even if I couldn't take the Copaxone any more I wouldn't go back to the interferons.. I don't know that Copaxone doesn't offer some healing.. though they can't "advertise" that it does, because it "wasn't part of the original study".. I went from using a cane to walking unassisted, then running (well not "running") up and down stairs several times a day three days a week, (last week of the month was all five days of the work week).. until the fall that messed up my knees.. the fall was MS related of course, but the damage to the knees was fall related not MonSter induced... Quote Link to comment Share on other sites More sharing options...
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