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My first and only major flare seemed to last about four to five months. IVSM did not seem to help. I really do not understand this whole MS thing either. :eek:I never experienced a complete remission. My muscle spasticity has remained as well as burning pain. Other symptoms come and go. But they say I have RRMS too, and that I am stable despite increase in number of lesions in last year. Of course, I was dx at the age of 50 and probably had ms for several years with minor symptoms prior to dx. I have decided not to worry about what type I have at this point.
It does seems like you are on IVSM too often. Or are you describing pulse steriods? Steriods can really rob your body of calcium. Have you tried baclofen or something similar for spasticity? Research all of the treatments. I think you are supposed to give copaxone about a year before you can decide it is not working for you. |
Thanks for the info...I am on baclofen, and the NP just increased the doseage, as well as increased the gabapentin for pain. But the IVSM monthly takes the sxs down to miraculous levels.
I just got back from PT...I first went last Tuesday. He couldn't believe how bad I'd gotten. I could hardly walk, and I was dragging my rt. foot and could not straighten my legs to walk straight. I'd already increased the baclofen to 60 mg/day. Last Thur. I had the IVSM. I walked in to PT today, and he couldn't believe the difference. So after about 2-21/2 wks, I'll stiffen up again and the pain will increase. And I'm scheduled for an IVSM after 4 wks. I go to Hawaii the next day, and see a different neuro when I get back, so I'll see what he thinks about all of these meds/ IVs. Until then I just want to be able to walk and sleep and not go to the bathroom in my pants. Just until then... |
It sounds like you and your neruo are doing things right. I'm so glad you have Hawaii to look forward to. Maui is my favorite place on earth. Where are you going?
I was diagnosed with MS in the early 1990's, mine started out with numbness on the right-hand side of my body from my head to my toes. It took about two years and lots of tests and questions and disbeliefs until I got a diagnosis. I had a mild case for a long time, until about six years ago when my arms got very weak and my hands became uncoordinated. I was a medical transcriptionist, working in a field I loved and at a great medical center. I had to quit, and eventually got on disability. About three years ago, my legs got very weak and I began falling a lot. That's when I had to start using a rollator. A few months ago I developed whole-body tremors, and twice I had ON. My neuro has been hinting at SPMS for awhile, and I believe that is what it's gone into because nothing gets better on its own or goes away anymore. I'm on Baclofen for spasms, Klonopin for tremors, Betaseron for 2 1/2 years, and Neuronton. I had IVSM in Dec after the last ON episode and it cleared up my pain and blurriness. I have learned that you do what you gotta do to get by. This forum has been amazing to me. I get more answers and help here than from any of my doctors. Then, I take the information to my docs. You've got to just keep fighting this disease. Every time it knocks you down, get back up as best you can and keep going. :) |
Barb, I don't think the IVSM is pulse...just a regular ole IV.
Maryann, it took you so long to get dxd, even with all those sxs. It sucketh...did your ON last long? I keep getting different eye sxs, but they don't usually last more than 10-15 minutes. I worry so much about what all of these meds are doing to my vital organs. And I just feel like I don't have the answers from the neuro/NP that I need to understand what is really going on here. Thanks for all the info. Oh, by the way, we go to Maui for a week and Kauai for a week. At first I liked Kauai more, but Maui's really starting to grow on me:) |
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Yes, I also worry about what the meds are doing. My neuro does bloodwork every three months, and my PCP does blookwork once a year, but I still worry. I'm probably going to stop Betaseron in August, but that's another story. With the second bout of ON, I had 48 straight hours of intense pain. It then tapered off to of-and-on until I had the steroids, now I get it only rarely. My left eye remained blurry until about a week after the steroids, now it's off and on. I keep thinking that losing my eyesight would be the worse thing that could happen with this disease. Ultimately, it's your decision about what you want to do as far as treatment goes. You have to balance side effects with how much the meds are helping you. Stretching exercises instead of Baclofen has been a topic. And, I know that exercises are a whole lot better than pills. However Baclofen has taken away my muscle spasms so for now I'm sticking with it, although I also do stretching exercises and Yoga. Thank goodness for this forum, because there are people here who've been through just about everything that MS can through at you. I've learned a lot here, and feel that the more informed I am, the better I can discuss my problems and options with my doctors. That's what I was trying to say when I made the comment about you and your neuro doing things right. It sounds like you're doing the same thing, staying informed. |
Debbie, I guess I just never have heard of having IVSM every month. Do you receive it for several days? Do an oral taper?
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Barb,
The first month, the neuro had me do a 3 day IVSM with a 15 day oral taper of oral prednisone. But I react so bad to the oral that I called him and they discontinued the oral. So they decided to give me a once a month IVSM of increased SM without the oral taper. I notice that the IV meds last about 2 weeks before the spasms return in full force, and I have bad bladder probs again. I get so stiff that I finally got the cane out of its hiding place, because I just couldn't walk well at all...and I am so stiff and bent that I look like my 87 yr. old FIL with Parkinson's. These spasms are bad...and as much as I hate being on the steroids, what with the metallic taste and the headache, it's such a relief to be able to walk like a "normal" person and not worry about not being close to my bathroom. I know that the steroids are probably taking a toll...I worry about it, esp since the neuro hasn't talked to me at all about the effects. I sure hope that you get to feeling a bit better...take care...spring break's coming soon!!:D |
Does a flare up last for months? Do the sxs of a flareup sometimes stay permanently?
A flare can last for months, or it can be shorter in duration. Often the symptoms of a flare remit, sometimes completely, sometimes partially. But, yes, they can remain permanently. These are often referred to as residual symptoms. Do some sxs dissipate and others stay when a flare lessens? Yes; this can happen. Some symptoms may go away, while others remain. How does the neuro know if you're RR or SP? How do you know if you go into SP from RR? Not that I want to find out, just curious. NMSS says that, before the disease-modifying medications became available, approximately 50% of people with RRMS developed SPMS within 10 years. It likely takes longer than that to develop SPMS, if you're on a DMD, which is designed to delay the progress of the disease. If you have SPMS, your disease would progress more steadily than before, and, you may or may not continue to have relapses. ~ Faith |
Hi Deb,
I've had relapses with new symptoms that disappeared within a few months. I've also had them that lasted for almost a year then disappeared. Two relapses were well-defined and undoubtable. Others have been more subtle that sort of crept up on me. IVSM never seemed to help me much. I had it twice and things seemed to get worse. If I need it again, I'll just have a lower dose for three days and no taper. The taper seemed to cause most of the problems. Enjoy your trip to Hawaii! :hug: :) I hope your appt with the new neuro answers some questions and maybe he'll be able to offer a better treatment regimen. |
i am tapering now but am doing ok, was curious, is it the taper Wiz or being off the full dose, i have read about others and their tapers not going well, kind of makes me wonder if its not the fact we dont have the full dose from the IVSM? just a thought, I remember my first taper off of the IVsm i did not in any way behave nicely, omg thats my trouble with the tapers is my angry or snappiness, not angry so much, just real short and snappy,
I are not a nice steroid people :p |
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