Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Hi Bette: Welcome to the group! I too am fairly new to the PLS. I was diagnosed in September 1999, and had been symptomatic for about 1 1/2 yrs before that. I also noticed how easily I tripped, weaker legs, and that I was wearing out my shoes in the toes. I had always work out the heels first. I attributed the problems to a back injury, and went to the Mayo Clinic Spine Center in Rochester, Minn. They immediately found the neurological symptoms, and began testing to rule out everything else, thus came up with the diagnosis of PLS. I ambulate pretty well yet, with use of a cane once in awhile. I am not on any medication, but my neuro wants me to start Baclofen. Once again, welcome, and I hope the group can help with your questions. Laurel I'm a Newbee > Dear PLS Friends, > > I seem to be the new kid on the block and am looking forward to > getting to know you. Some background: I was diagnosed in 1997 and > rediagnosed this past winter. I began noticing the loss of balance > as far back as 1995 and seemed to trip (and fall) about one every six > months. Recently I've begun using a cane about 90% of the time. My > spasticity is the worst upon rising, improves somewhat during the day > and reverts to " worst " again in the evening. I also experienced back > pain and didn't realize that it is so closely related to PLS. > > My neurologist in Phoenix scripted baclofen and neurontin which have > helped the muscle spasms, although my legs seemed to feel weaker. We > are now up in northern Idaho until late October and I am hoping one > of you might be in this area and can suggest a neuro around > Spokane/Coeur d'Alene. > > After reading through some of your April archives, I realize we're > all in various stages of the disease. I'd appreciate whatever > comments/assistance you can offer. > > Thank you for listening....hope to hear from you soon. > > Take care............Bette (that's , not Midler!) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Bette: Welcome, I am also new (April) to the group. As I read your letter, I wondered how many mg of Baclofen you take each dose and how many doses a day. I take 5 mg three times a day, and I remember one person in the group saying they took 5 mg two times a day. Perhaps you would get relief and not experience weakness at a lower dose, however, you may already take a low dose and would need to ask your dr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 Hi ...Nice to meet you. Thanks for responding. Levy has sent me loads of info, newsletters, etc. I've got lots to read and catch up on. I take 10 mg of baclofen twice a day. Since I also take celebrex (for sciatica and arthritis) twice a day, I can't really determine which is helping what. All I know is that the horrible muscle spasms occur rarely now. Have you had a problem at the beauty salon? When I lay my head back in the shampoo chair I start getting spasms even if I ask for a towel under my head. It's wonderful to communicate with someone who understands the problems. Take care, Bette >From: sjcalame@... >Reply-To: PLS-FRIENDS >To: PLS-FRIENDS >Subject: Re: I'm a Newbee >Date: Mon, 14 May 2001 17:14:16 EDT > >Bette: >Welcome, I am also new (April) to the group. As I read your letter, I >wondered how many mg of Baclofen you take each dose and how many doses a >day. >I take 5 mg three times a day, and I remember one person in the group >saying >they took 5 mg two times a day. Perhaps you would get relief and not >experience weakness at a lower dose, however, you may already take a low >dose >and would need to ask your dr. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Bette Spasticity doesn't bother me at the shampoo bowl, but it gives me a fit when I "walk." My gait can get quite jerky, and when I step down I often feel like I'm bouncing (from the clonus, I suppose). I experience much less of this, and of muscle cramps at night, now that I'm taking baclofen. Also my stiff neck is much less bothersome. I considered asking about a baclofen pump, however, after a spinal tap I had to have a leak plugged with a blood patch. From what I've heard you can have a leaking problem after the insertion of a pump--so no thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 , Thanks for your comments....I believe I answered you the other day but I keep getting knocked off of my internet connection....so I'm not sure it went through. I take two doses of 10 mg of baclofen....I have an appt in a couple weeks with a neurologist in Spokane. I'm hoping that he'll have some insight that my Phoenix neuro didn't have. All the info I received from Levy has been helpful. Take care.............Bette >From: sjcalame@... >Reply-To: PLS-FRIENDS >To: PLS-FRIENDS >Subject: Re: I'm a Newbee >Date: Mon, 14 May 2001 17:14:16 EDT > >Bette: >Welcome, I am also new (April) to the group. As I read your letter, I >wondered how many mg of Baclofen you take each dose and how many doses a >day. >I take 5 mg three times a day, and I remember one person in the group >saying >they took 5 mg two times a day. Perhaps you would get relief and not >experience weakness at a lower dose, however, you may already take a low >dose >and would need to ask your dr. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Bette, The spasms at the beauty salon may indicate you may have a problem in your neck. But I assume you had that checked out with XRAYS and MRIs. I got pain in my arms when they did it so now I stand and bend over forward. BTW, I am taking 100 mg of Baclofen plus many other drugs to try to keep walking. Alan Kirk Re: I'm a Newbee > >Date: Mon, 14 May 2001 17:14:16 EDT > > > >Bette: > >Welcome, I am also new (April) to the group. As I read your letter, I > >wondered how many mg of Baclofen you take each dose and how many doses a > >day. > >I take 5 mg three times a day, and I remember one person in the group > >saying > >they took 5 mg two times a day. Perhaps you would get relief and not > >experience weakness at a lower dose, however, you may already take a low > >dose > >and would need to ask your dr. > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Alan, Bending over would be worse since even picking up anything off the floor makes my legs momentarily weaker and I have to sit for a minute. That seems like a high dose of baclofen but if it keeps you walking, that's good. Thanks for responding...............Bette > >Reply-To: PLS-FRIENDS >To: <PLS-FRIENDS > >Subject: Re: I'm a Newbee >Date: Fri, 18 May 2001 13:30:21 -0400 > >Bette, > >The spasms at the beauty salon may indicate you may have a problem in your >neck. But I assume you had that checked out with XRAYS and MRIs. I got >pain in my arms when they did it so now I stand and bend over forward. > >BTW, I am taking 100 mg of Baclofen plus many other drugs to try to keep >walking. > >Alan Kirk > > Re: I'm a Newbee > > >Date: Mon, 14 May 2001 17:14:16 EDT > > > > > >Bette: > > >Welcome, I am also new (April) to the group. As I read your letter, I > > >wondered how many mg of Baclofen you take each dose and how many doses >a > > >day. > > >I take 5 mg three times a day, and I remember one person in the group > > >saying > > >they took 5 mg two times a day. Perhaps you would get relief and not > > >experience weakness at a lower dose, however, you may already take a >low > > >dose > > >and would need to ask your dr. > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 >Alan, had you looked at the pump? I am so impressed at getting better >relief and not being in a fog- I hadn't realized how much better I could >feel until I actually experienced it. Lavon > > > >BTW, I am taking 100 mg of Baclofen plus many other drugs to try to keep > >walking. > > > >Alan Kirk > > Quote Link to comment Share on other sites More sharing options...
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