Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 My legs are not stiff during the > day (just occasionally in the evening when I'm tired or it's cold). > My walking problem stems from weakness of my right leg and very poor > balance. Do baclofen or zanaflex help those problems? > Hello again Edith! it seems as though you and i have the exact same symptoms of PLS. I, too, don't get stiff unless it's cold.....and that just started this year, for me. my neuro has checked me for spasticity and says i have little to none...just extreme weakness and loss of balance. it was only in my right side for many years, but now has begun it's move to my left side. I got my AFO for the left leg yesterday and have worn my right AFO since 1997. anyway, i take zanaflex only for spasms and those occasional trips out into the cold. i take 4 - 6 mg at night and take it during the day only if i need it. I don't think there is any help for weakness in terms of meds. that is why I've opted for the wheelchair. the weakness has spread not only to both legs now, but also into my hips. i do have nerve pain, but take neurontin for that and i am so grateful that it works for me.....if it stops working.....well, me and connie will be " GROWING " our pain meds here in Ohio! LOL best of luck to you at your new years party....ride your scooter with pride and enjoy yourself. happy new year to you all and may you all have good health and " NO " PLS progression this year. maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Edith, I am on 10 mg. of baclofen 4 times a day. My legs do feel stronger but am still not walking. This scares me because after I get on right dosage I am suppose to walk. I do not know if this has anything to do with it but I am getting nauseated, losing hair, wild dreams, etc. After Holdays are over I am going to call doctor about this. Jane Anne King Baclofen and Zanaflex > I've been reading how these two drugs have enabled people to go from > a walker to using a cane or nothing. It's my understanding that > these drugs reduce spacticity...right? > > I take 5mg of Baclofen in the morning and 10 mg before bed. The > bedtime dose has decreased my leg spasms during the night. I have no > idea what the 5mg is doing for me. My legs are not stiff during the > day (just occasionally in the evening when I'm tired or it's cold). > My walking problem stems from weakness of my right leg and very poor > balance. Do baclofen or zanaflex help those problems? > > My neuro (who is clueless) said I should increase baclofen " if I > needed it, " but I'm not sure if I do. I could start taking 10 mg of > baclofen in the morning if I thought it would help. Anybody have any > thoughts on this? > > P.S. I'm working on an appointment with another neuro, but that > won't happen until Jan. or Feb. > edith > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Edith, My experience with those medications is that they decreased spasticity but increased my weakness. It seems that the spasticity was enabling my strength. I can't understand how they allow people to walk again but maybe that's how things work for some--not me. I try to take as little as possible because the weakness becomes overwhelming. I think that some PLSers don't have weakness--just spasticity. Dolores Baclofen and Zanaflex > I've been reading how these two drugs have enabled people to go from > a walker to using a cane or nothing. It's my understanding that > these drugs reduce spacticity...right? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Mostly it's to help spasticity but also clonus and cramping. I have very poor balance but it's due to bad spasticity... Can you find a new neur, you know one that can at least spell PLS ;-) dale Baclofen and Zanaflex > I've been reading how these two drugs have enabled people to go from > a walker to using a cane or nothing. It's my understanding that > these drugs reduce spacticity...right? > > I take 5mg of Baclofen in the morning and 10 mg before bed. The > bedtime dose has decreased my leg spasms during the night. I have no > idea what the 5mg is doing for me. My legs are not stiff during the > day (just occasionally in the evening when I'm tired or it's cold). > My walking problem stems from weakness of my right leg and very poor > balance. Do baclofen or zanaflex help those problems? > > My neuro (who is clueless) said I should increase baclofen " if I > needed it, " but I'm not sure if I do. I could start taking 10 mg of > baclofen in the morning if I thought it would help. Anybody have any > thoughts on this? > > P.S. I'm working on an appointment with another neuro, but that > won't happen until Jan. or Feb. > edith > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Jane, Baclofen was a wonder drug for me but once I got over 30 mg/day I felt nauseated all the time and didn't eat much. After 6 weeks they decided to push me to 40mg/day, I became bedridden... I was horribly sick, they dropped me back to 20mg/day and with 36 hours I was fine. We tried several times to slowly raise the dosage but as soon as I hit 30... so yes it can be the Baclofen. dale Baclofen and Zanaflex > > > > I've been reading how these two drugs have enabled people to go from > > a walker to using a cane or nothing. It's my understanding that > > these drugs reduce spacticity...right? > > > > I take 5mg of Baclofen in the morning and 10 mg before bed. The > > bedtime dose has decreased my leg spasms during the night. I have no > > idea what the 5mg is doing for me. My legs are not stiff during the > > day (just occasionally in the evening when I'm tired or it's cold). > > My walking problem stems from weakness of my right leg and very poor > > balance. Do baclofen or zanaflex help those problems? > > > > My neuro (who is clueless) said I should increase baclofen " if I > > needed it, " but I'm not sure if I do. I could start taking 10 mg of > > baclofen in the morning if I thought it would help. Anybody have any > > thoughts on this? > > > > P.S. I'm working on an appointment with another neuro, but that > > won't happen until Jan. or Feb. > > edith > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Dale, I am having trouble with the baclofen. I think I am sick most of the time and do not want what I have to eat. I am taking 10mg. 4 times a day. I am sick when I go to bed and sick when I wake up. I just do not feel good and am not sleeping as well now. I will get to talk to Joanie tomorrow and see what she has to say. Is this some of the things you went through? Jane Anne King Baclofen and Zanaflex > > > > > > > I've been reading how these two drugs have enabled people to go from > > > a walker to using a cane or nothing. It's my understanding that > > > these drugs reduce spacticity...right? > > > > > > I take 5mg of Baclofen in the morning and 10 mg before bed. The > > > bedtime dose has decreased my leg spasms during the night. I have no > > > idea what the 5mg is doing for me. My legs are not stiff during the > > > day (just occasionally in the evening when I'm tired or it's cold). > > > My walking problem stems from weakness of my right leg and very poor > > > balance. Do baclofen or zanaflex help those problems? > > > > > > My neuro (who is clueless) said I should increase baclofen " if I > > > needed it, " but I'm not sure if I do. I could start taking 10 mg of > > > baclofen in the morning if I thought it would help. Anybody have any > > > thoughts on this? > > > > > > P.S. I'm working on an appointment with another neuro, but that > > > won't happen until Jan. or Feb. > > > edith > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Definitely, I was taking Compazine and Zofran (things they give to chemo patients to handle the sickness) and I was still sick. Didn't want to eat, bothered my sleep, oh yes, sounds just like it. Did you have the problem at 30mg/day? If not ask if you can back down and once you feel better (it will be gone in a day) you can try going up to 35 for a couple of weeks then try 40 again. But if you get sick again, tell them sorry. Now I should say that it is common they tell me to have this problem for a couple of weeks and most get use to it, I tried for 6 weeks and my doctor finally gave up... dale Baclofen and Zanaflex > > > > > > > > > > I've been reading how these two drugs have enabled people to go from > > > > a walker to using a cane or nothing. It's my understanding that > > > > these drugs reduce spacticity...right? > > > > > > > > I take 5mg of Baclofen in the morning and 10 mg before bed. The > > > > bedtime dose has decreased my leg spasms during the night. I have no > > > > idea what the 5mg is doing for me. My legs are not stiff during the > > > > day (just occasionally in the evening when I'm tired or it's cold). > > > > My walking problem stems from weakness of my right leg and very poor > > > > balance. Do baclofen or zanaflex help those problems? > > > > > > > > My neuro (who is clueless) said I should increase baclofen " if I > > > > needed it, " but I'm not sure if I do. I could start taking 10 mg of > > > > baclofen in the morning if I thought it would help. Anybody have any > > > > thoughts on this? > > > > > > > > P.S. I'm working on an appointment with another neuro, but that > > > > won't happen until Jan. or Feb. > > > > edith > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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