When does RRMS go to SPMS?
bluidmom posted:
I was dx back in 2004. I've had sx since my early 20's, I'm now in my mid 40's. Since my dx I have never had a remission of any sort, just a worsening of my sx along with new things over the years. I am on SSDI due to bad cognitive issues. I flunked my neuro-phych exam, he actually wrote that it was hard to believe I was able to continue working with such deficits. I have the wide array of MS yuckies: pain in legs, bowel and bladder problems, word findings, stuttering at times, no memory, bad gait, left sided weakness, numbness and tingles, all the fun stuff.
I told my neuro at my last visit that I just feel like I'm getting worse. I've been on Tysabri now for the last 6 months. I do feel great for the 1st couple of weeks after my infusion, lots of energy and stuff. But for some reason, my legs really feel like they are starting to give out on me. I refuse to give up on them, or let them give up on me. I do my own PT exercises at home as I cannot afford the 40 dollar copay each time to go to a PT and I cannot afford a gym membership. He just gave me a sheet and ordered a bunch of blood work to see if something else is going on. I just had the same blood work ordered by my endo about a month ago as I also have hypothyroid. It all came back fine except my TSH was a little low.
I don't really know what kind of MS I have as my Neuro has never told me. I got dx at the hospital after they thought I was having a stroke because my whole left side went numb and was burning. They did 2 MRI's and a spinal and found lesions and the O-bands positive for MS.
Sorry this is so long winded, I'm just frustrated and lost. Oh, and my face by my mouth keeps moving on it's own, like going down on the left side, it's sooo annoying. My Neuro said he could do botox for that! What is going on with my MS??
I told my neuro at my last visit that I just feel like I'm getting worse. I've been on Tysabri now for the last 6 months. I do feel great for the 1st couple of weeks after my infusion, lots of energy and stuff. But for some reason, my legs really feel like they are starting to give out on me. I refuse to give up on them, or let them give up on me. I do my own PT exercises at home as I cannot afford the 40 dollar copay each time to go to a PT and I cannot afford a gym membership. He just gave me a sheet and ordered a bunch of blood work to see if something else is going on. I just had the same blood work ordered by my endo about a month ago as I also have hypothyroid. It all came back fine except my TSH was a little low.
I don't really know what kind of MS I have as my Neuro has never told me. I got dx at the hospital after they thought I was having a stroke because my whole left side went numb and was burning. They did 2 MRI's and a spinal and found lesions and the O-bands positive for MS.
Sorry this is so long winded, I'm just frustrated and lost. Oh, and my face by my mouth keeps moving on it's own, like going down on the left side, it's sooo annoying. My Neuro said he could do botox for that! What is going on with my MS??
1 Replies |Watch This Discussion | Report This| Share this:When does RRMS go to SPMS?I was dx back in 2004. I've had sx since my early 20's, I'm now in my mid 40's. Since my dx I have never had a remission of any sort, just a worsening of my sx along with new things over the years. I am on SSDI due to bad cognitive issues. I flunked my neuro-phych exam, he actually wrote that it was hard to believe I was able to continue working with such deficits. I have the wide array of MS yuckies: pain in legs, bowel and bladder problems, word findings, stuttering at times, no memory, bad gait, left sided weakness, numbness and tingles, all the fun stuff.<br />I told my neuro at my last visit that I just feel like I'm getting worse. I've been on Tysabri now for the last 6 months. I do feel great for the 1st couple of weeks after my infusion, lots of energy and stuff. But for some reason, my legs really feel like they are starting to give out on me. I refuse to give up on them, or let them give up on me. I do my own PT exercises at home as I cannot afford the 40 dollar copay each time to go to a PT and I cannot afford a gym membership. He just gave me a sheet and ordered a bunch of blood work to see if something else is going on. I just had the same blood work ordered by my endo about a month ago as I also have hypothyroid. It all came back fine except my TSH was a little low.<br />I don't really know what kind of MS I have as my Neuro has never told me. I got dx at the hospital after they thought I was having a stroke because my whole left side went numb and was burning. They did 2 MRI's and a spinal and found lesions and the O-bands positive for MS.<br />Sorry this is so long winded, I'm just frustrated and lost. Oh, and my face by my mouth keeps moving on it's own, like going down on the left side, it's sooo annoying. My Neuro said he could do botox for that! What is going on with my MS??
hackwriter responded:
Dear bluidmom,
It sounds as though you are being treated for RRMS and that you've sustained permanent damage from your flares (which is pretty common). But you do need to discuss all the issues you've raised with your neuro to get clear on why he's put you on this course of therapy.
t's not easy for neuros to determine whether we've slipped into SPMS. We can still have some inflammation/flares in that stage, and our RRMS therapies can still be useful at that time. And bear in mind that we don't all progress at the same rate. With all the advances in RRMS therapies now, progressing to SPMS can be delayed for decades our not happen at all.
We do have ups and downs with RRMS, and we do sustain permanent damage from flares over the years. That's just how we roll with RRMS, so what you have described sounds like a fairly "normal" case of RRMS. Symptom management is key, now. Muscle relaxers, neuropathic pain meds, and yes, Botox, which has been used to treat bladder spasticity is now being used for other spastic areas as well.
I had a similar experience as yours when I first started Tysabri; I had more energy for the first three months, but I soon returned to baseline weakness and fatigue. I don't believe it was Tysabri that caused that temporary improvement since I've experienced such ups and downs on other therapies and also during the two years I've been on no therapy at all. Again, that's how we roll when we are in the inflammatory stage.
I hope you'll discuss your concerns with your neuro and find out where he thinks you stand disease-wise, and also have a good talk about all your options for symptom management.
Kim
It sounds as though you are being treated for RRMS and that you've sustained permanent damage from your flares (which is pretty common). But you do need to discuss all the issues you've raised with your neuro to get clear on why he's put you on this course of therapy.
t's not easy for neuros to determine whether we've slipped into SPMS. We can still have some inflammation/flares in that stage, and our RRMS therapies can still be useful at that time. And bear in mind that we don't all progress at the same rate. With all the advances in RRMS therapies now, progressing to SPMS can be delayed for decades our not happen at all.
We do have ups and downs with RRMS, and we do sustain permanent damage from flares over the years. That's just how we roll with RRMS, so what you have described sounds like a fairly "normal" case of RRMS. Symptom management is key, now. Muscle relaxers, neuropathic pain meds, and yes, Botox, which has been used to treat bladder spasticity is now being used for other spastic areas as well.
I had a similar experience as yours when I first started Tysabri; I had more energy for the first three months, but I soon returned to baseline weakness and fatigue. I don't believe it was Tysabri that caused that temporary improvement since I've experienced such ups and downs on other therapies and also during the two years I've been on no therapy at all. Again, that's how we roll when we are in the inflammatory stage.
I hope you'll discuss your concerns with your neuro and find out where he thinks you stand disease-wise, and also have a good talk about all your options for symptom management.
Kim
Report This| Share this:When does RRMS go to SPMS?Dear bluidmom,<br /><br />It sounds as though you are being treated for RRMS and that you've sustained permanent damage from your flares (which is pretty common). But you do need to discuss all the issues you've raised with your neuro to get clear on why he's put you on this course of therapy. <br /><br />t's not easy for neuros to determine whether we've slipped into SPMS. We can still have some inflammation/flares in that stage, and our RRMS therapies can still be useful at that time. And bear in mind that we don't all progress at the same rate. With all the advances in RRMS therapies now, progressing to SPMS can be delayed for decades our not happen at all.<br /><br />We do have ups and downs with RRMS, and we do sustain permanent damage from flares over the years. That's just how we roll with RRMS, so what you have described sounds like a fairly "normal" case of RRMS. Symptom management is key, now. Muscle relaxers, neuropathic pain meds, and yes, Botox, which has been used to treat bladder spasticity is now being used for other spastic areas as well.<br /><br />I had a similar experience as yours when I first started Tysabri; I had more energy for the first three months, but I soon returned to baseline weakness and fatigue. I don't believe it was Tysabri that caused that temporary improvement since I've experienced such ups and downs on other therapies and also during the two years I've been on no therapy at all. Again, that's how we roll when we are in the inflammatory stage.<br /><br />I hope you'll discuss your concerns with your neuro and find out where he thinks you stand disease-wise, and also have a good talk about all your options for symptom management. <br /><br />Kim
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