Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Hi Stan, I feel much better with my pump but the gains were modest- much of the benefit is keeping symptoms under better control. My balance is lousy, no improvement with the pump. My foot drop is less but my walking is still very slow and I must use my walker or I fall. No miracles here but the improvement in comfort in being more alert and having fewer spasms as well as not having clonus (that made my legs feel wobbly) and being looser come close- what I'm trying to say is the pump is no where near a cure but it does help endurance until something better comes along. Incidentally, had great results with speech- I notice no difference but my speech is just now starting to go. Lavon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Stan, I had baclofen pump surgery in Nov. 2001. I am not sorry I had it, but I had hoped for more. I guess that's pretty normal, we all maybe looking for something that will allow us to be more functional. The benefits, increased endurance for activities I can do, which are not to numerous, sleeping better, less discomfort, unless I over do it. My voice did improve at first but I'm having more trouble now. I'm still in the process of fine tuning the dose. I am happy with the results I have achieved. My balance is still poor, I use a 4-wheeled walker. Good luck with your surgery, I will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Stan, I had baclofen pump surgery in Nov. 2001. I am not sorry I had it, but I had hoped for more. I guess that's pretty normal, we all maybe looking for something that will allow us to be more functional. The benefits, increased endurance for activities I can do, which are not to numerous, sleeping better, less discomfort, unless I over do it. My voice did improve at first but I'm having more trouble now. I'm still in the process of fine tuning the dose. I am happy with the results I have achieved. My balance is still poor, I use a 4-wheeled walker. Good luck with your surgery, I will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Stan, I had baclofen pump surgery in Nov. 2001. I am not sorry I had it, but I had hoped for more. I guess that's pretty normal, we all maybe looking for something that will allow us to be more functional. The benefits, increased endurance for activities I can do, which are not to numerous, sleeping better, less discomfort, unless I over do it. My voice did improve at first but I'm having more trouble now. I'm still in the process of fine tuning the dose. I am happy with the results I have achieved. My balance is still poor, I use a 4-wheeled walker. Good luck with your surgery, I will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2002 Report Share Posted September 23, 2002 I am extremely happy for you - spell that e-n-v-i-o-u-s. Congratulations. Can you tell me the name of the Dr at Shepard that you saw. I have had no success with either baclofen or zanaflex. The side effects were worse than the benefits. I assumed (wrongly apparently) that a baclofen pump would end up the same way. Knoxville is not exactly a prime site for neurologists. I'm on my fourth one. I fired two and one fired me. My current neuro (I've seen him once) said that if we could find a way to lessen my spasticity, my balance would improve. Atlanta is only about 4 hours from Knoxville and I would drive that far for some relief in a heartbeat. I believe you can hang in there like a rusty fish hook. Vaughn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 and everyone that has a pump, What specific kind of baclofen is being used in your pumps? The pump was working great for me until they started mixing a generic form of baclofen and filling my pump. Now it is not working and I am back to the oral baclofen. Any suggestions on what I can do. I would like to go to my Dr. with as much info as possible. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 and everyone that has a pump, What specific kind of baclofen is being used in your pumps? The pump was working great for me until they started mixing a generic form of baclofen and filling my pump. Now it is not working and I am back to the oral baclofen. Any suggestions on what I can do. I would like to go to my Dr. with as much info as possible. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2002 Report Share Posted October 15, 2002 Hi All,I got a phone call today,from a female PLSer in my hometown (London,Ontario,Canada.)to ask if I knew anything about the Baclofen Pump,as our neuro has suggested she should have one,she said he told her that at this time she has good muscle strength,but significant spasticity,and this may not be the case in 5 years or so.I told her that I didn't know much about them but I knew that several members of our group had them,and that I would post a call for any input,positive or negative,from the members who have them.Unfortunately she doesn't have a computer,so if you could send your input to Donna,I will print them off,and make sure she gets them.My email address is: ..dnunn@... or you can reply through PLSFRIENDS. Thank you in advance.Dave. Nunn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Hi, My baclofen pump has been a big success. I agree that it is better to have the pump implanted while you are still strong. When I had my pump implant, June 2000, my dose was at 50 ul per day. We've done steady increases and my visit yesterday resulted in my most recent increase to 616 ul. Yesterday my walking was very slow and my speech was weak and slurred. Today I am zipping around and my speech is clear and strong. Amazing! What a difference a day makes! I just hope this increase lasts for a while. I asked Dr. Brandstater about the issue of catheters breaking. I haven't had any trouble but know that others have had problems. He said they have had problems in the past and that the catheter has recently been improved to hopefully avoid that problem. I think it is important to get a physiatrist that is very experienced with pumps. Feel free to call me if you'd like any more info: Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Hi, My baclofen pump has been a big success. I agree that it is better to have the pump implanted while you are still strong. When I had my pump implant, June 2000, my dose was at 50 ul per day. We've done steady increases and my visit yesterday resulted in my most recent increase to 616 ul. Yesterday my walking was very slow and my speech was weak and slurred. Today I am zipping around and my speech is clear and strong. Amazing! What a difference a day makes! I just hope this increase lasts for a while. I asked Dr. Brandstater about the issue of catheters breaking. I haven't had any trouble but know that others have had problems. He said they have had problems in the past and that the catheter has recently been improved to hopefully avoid that problem. I think it is important to get a physiatrist that is very experienced with pumps. Feel free to call me if you'd like any more info: Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Hi, My baclofen pump has been a big success. I agree that it is better to have the pump implanted while you are still strong. When I had my pump implant, June 2000, my dose was at 50 ul per day. We've done steady increases and my visit yesterday resulted in my most recent increase to 616 ul. Yesterday my walking was very slow and my speech was weak and slurred. Today I am zipping around and my speech is clear and strong. Amazing! What a difference a day makes! I just hope this increase lasts for a while. I asked Dr. Brandstater about the issue of catheters breaking. I haven't had any trouble but know that others have had problems. He said they have had problems in the past and that the catheter has recently been improved to hopefully avoid that problem. I think it is important to get a physiatrist that is very experienced with pumps. Feel free to call me if you'd like any more info: Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , I don't know what kind, wish I'd seen your message earlier, I went to get a refill yesterday and I could have asked. Mine just says: Drug: BACLO Concentration: 2000 ug/ I found this at info: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202999.html Brand Names In the U.S.- Lioresal Intrathecal In Canada- Lioresal Intrathecal Category Antispastic Description Intrathecal baclofen ( In-trah-THE-kal BAK-loe-fen) is used to help relax certain muscles in your body. It relieves the spasms, cramping, and tightness of muscles caused by medical problems such as multiple sclerosis, cerebral palsy, or certain injuries to the spine. Intrathecal baclofen does not cure these problems, but it may allow other treatment, such as physical therapy, to be more helpful in improving your condition. Intrathecal baclofen acts on the central nervous system (CNS) to produce its muscle relaxant effects. Its actions on the CNS may also cause some of the medicine's side effects. This medicine is delivered by a drug pump directly into the spinal fluid of your back. A doctor will surgically place the pump and monitor the dose of the medication that is delivered by the pump. The dose of intrathecal baclofen will be different for different patients and will depend on the type of muscle tightness that you have. Intrathecal baclofen is given only by or under the direct supervision of a doctor. It is available in the following dosage form: Intrathecal Injection (U.S. and Canada) Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , I don't know what kind, wish I'd seen your message earlier, I went to get a refill yesterday and I could have asked. Mine just says: Drug: BACLO Concentration: 2000 ug/ I found this at info: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202999.html Brand Names In the U.S.- Lioresal Intrathecal In Canada- Lioresal Intrathecal Category Antispastic Description Intrathecal baclofen ( In-trah-THE-kal BAK-loe-fen) is used to help relax certain muscles in your body. It relieves the spasms, cramping, and tightness of muscles caused by medical problems such as multiple sclerosis, cerebral palsy, or certain injuries to the spine. Intrathecal baclofen does not cure these problems, but it may allow other treatment, such as physical therapy, to be more helpful in improving your condition. Intrathecal baclofen acts on the central nervous system (CNS) to produce its muscle relaxant effects. Its actions on the CNS may also cause some of the medicine's side effects. This medicine is delivered by a drug pump directly into the spinal fluid of your back. A doctor will surgically place the pump and monitor the dose of the medication that is delivered by the pump. The dose of intrathecal baclofen will be different for different patients and will depend on the type of muscle tightness that you have. Intrathecal baclofen is given only by or under the direct supervision of a doctor. It is available in the following dosage form: Intrathecal Injection (U.S. and Canada) Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , I don't know what kind, wish I'd seen your message earlier, I went to get a refill yesterday and I could have asked. Mine just says: Drug: BACLO Concentration: 2000 ug/ I found this at info: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202999.html Brand Names In the U.S.- Lioresal Intrathecal In Canada- Lioresal Intrathecal Category Antispastic Description Intrathecal baclofen ( In-trah-THE-kal BAK-loe-fen) is used to help relax certain muscles in your body. It relieves the spasms, cramping, and tightness of muscles caused by medical problems such as multiple sclerosis, cerebral palsy, or certain injuries to the spine. Intrathecal baclofen does not cure these problems, but it may allow other treatment, such as physical therapy, to be more helpful in improving your condition. Intrathecal baclofen acts on the central nervous system (CNS) to produce its muscle relaxant effects. Its actions on the CNS may also cause some of the medicine's side effects. This medicine is delivered by a drug pump directly into the spinal fluid of your back. A doctor will surgically place the pump and monitor the dose of the medication that is delivered by the pump. The dose of intrathecal baclofen will be different for different patients and will depend on the type of muscle tightness that you have. Intrathecal baclofen is given only by or under the direct supervision of a doctor. It is available in the following dosage form: Intrathecal Injection (U.S. and Canada) Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , Oh darn my timing is always off. The concentration is only 1000. That maybe part of the problem. Next time you go in could you please ask. Thank you so much. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , Oh darn my timing is always off. The concentration is only 1000. That maybe part of the problem. Next time you go in could you please ask. Thank you so much. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , Oh darn my timing is always off. The concentration is only 1000. That maybe part of the problem. Next time you go in could you please ask. Thank you so much. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 , I went in last Thursday and had a 10% increase and it work a little better Friday but am getting stiff again today. I am going back in on Tuesday for another 10%. What % are you increasing your Baclofen. Devin moved most of his stuff out this weekend. He is spending his first night in his first apartment tonight. Now that it is just Allyson and I it will be quieter and less stress. Do you think we could have a fund raiser to pay for a new lawyer. I am now filling a complaint the one I had. I was told not to sign the divorce as it is but have run out of money to start again. has control of all the assets. I wish I could get that stress out of my life. You would think that would let me go after 4 years of not living together but when your nuts reason doesn't exist. Thank You so much for your help. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 , I went in last Thursday and had a 10% increase and it work a little better Friday but am getting stiff again today. I am going back in on Tuesday for another 10%. What % are you increasing your Baclofen. Devin moved most of his stuff out this weekend. He is spending his first night in his first apartment tonight. Now that it is just Allyson and I it will be quieter and less stress. Do you think we could have a fund raiser to pay for a new lawyer. I am now filling a complaint the one I had. I was told not to sign the divorce as it is but have run out of money to start again. has control of all the assets. I wish I could get that stress out of my life. You would think that would let me go after 4 years of not living together but when your nuts reason doesn't exist. Thank You so much for your help. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 , I went in last Thursday and had a 10% increase and it work a little better Friday but am getting stiff again today. I am going back in on Tuesday for another 10%. What % are you increasing your Baclofen. Devin moved most of his stuff out this weekend. He is spending his first night in his first apartment tonight. Now that it is just Allyson and I it will be quieter and less stress. Do you think we could have a fund raiser to pay for a new lawyer. I am now filling a complaint the one I had. I was told not to sign the divorce as it is but have run out of money to start again. has control of all the assets. I wish I could get that stress out of my life. You would think that would let me go after 4 years of not living together but when your nuts reason doesn't exist. Thank You so much for your help. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 , my last increase was 25%, from 494 to 617 ug/Day I'm on simple continuous. My last increased really, really, really helped....for two days. Now I'm back to my old self, dragging, staggering, falling down and slurring my words. Sounds like the description of a drunk! If only I could say I had a really good time I wouldn't mind it so much! Get a new lawyer, the meaner the better. Go to your closest window, open it, and scream at the top of your lungs " I'm mad as hell and I'm not going to take it anymore! " A good lawyer will make your ex and his attorney beg for mercy. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Hi All: There is such a difference of opinions pertaining to PLS and how to diagnosis it. To me these doctors (who are not familiar with PLS) treat us like ping-pong balls, back and forth back and forth. I am seeing a MDA neurologist tomorrow at the Lahey Clinic (where I was diagnosed back in 1986) and I am going to try to get some info from pertaining to why it is so difficult and take so long to get a diagnosis. I never went thru what you people are going thru. I was told you have PLS, no cure no treatment, go home and have a good life. To me it's not all that complicated, it's a matter of doing the research and try to go to a doctor who knows. This doctor I am seeing is suppose to be pretty savvy when it come to PLS. This is the same doctor who is treating my son-in-law for MG or Myothenia Gravis (spelling ???). Even my Primary Care doctor always says " whats the name of your disease, I can never remember it's name). I see this man every three months, and he never remembers, drives me nuts. I feel like making him write it 1000 times, like when we kids. I will tell you what I find out tomorrow night. Hope you all had a good weekend and have a great week. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth When you worry it's like sitting in a rocking chair, it gives you a good ride, but it doesn't get you any where. ************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Call the local county bar association or the Oregon State Bar - http://www.osbar.org/ they can help you find a low cost or pro bono representation. Other places to try are local law school clinics. Also your local couthouse may have a self help center as well. I'm not licensed in Oregon and am not familiar with divorce laws or able to offer any concrete legal representation or advice in your particular case. I'm confident that if you press these groups they'll help you. Lynn Holmes Attorney - California > , I went in last Thursday and had a 10% increase and it work a > little better Friday but am getting stiff again today. I am going back in > on Tuesday for another 10%. What % are you increasing your Baclofen. > Devin moved most of his stuff out this weekend. He is spending his first > night in his first apartment tonight. Now that it is just Allyson and I > it will be quieter and less stress. Do you think we could have a fund > raiser to pay for a new lawyer. I am now filling a complaint the one I > had. I was told not to sign the divorce as it is but have run out of > money to start again. has control of all the assets. I wish I could > get that stress out of my life. You would think that would let me > go after 4 years of not living together but when your nuts reason doesn't > exist. Thank You so much for your help. B. Oregon > > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Thank you, I will get on it. B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 Dr. Brandstater says we are under dosed and so our bodies adjust to it too quickly. I'm not sure what it will take to get my stupid body to give up and just go with the flow! I'm not sure if the spasticity increase is trying to keep pace with the baclofen increases or what. But I'd sure like to find out. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Baclofen Pump , My pump was at 200 continuous, last Monday went to 228 including an added boost from 6pm-10pm. It helped for a few days, but then got real stiff again. Going back tomorrow (10/23) for another increase. Any ideas why the increase doesn't provide benefit longer? Are we getting used to the medicine, so it has reduced effect? Have you gone through periods like this before? Are others having the same experience? Thanks for any info. Alan Kirk Quote Link to comment Share on other sites More sharing options...
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