Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Hi- I am new to this group. I have been been struggling with a neurological condition for 14 years. At first it was thought to be MS and about 5 years ago I was diagnosed with PLS. My only form of treatment is exercie and Baclofen. I am finding walking more difficult and am thinking I should go to Mayo to be sure of diagnosis and to get advice on other treatments. Where I currently live is in North Dakota and neurologists come and go at the clinic I am at. I would appreciate any advice or suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 I have had PLS for well over 30 years, dx in 1986. I was also told the same thing as you, and have been on Baclofan since day one. I commend your doctor for being, what I feel is totally honest, as there is a NO other treatment for PLS. If you feel the dx is a firm dx, then don't spend your time and effort running from this doc to that doc, and the end result is the same. Listen to your body and don't push yourself to do what you can't do, and do what you can do. I am almost 70 and still drive, and do a lot that I still can do. This disease slows you down, but it doesn't stop you. It will if you let it. Just my opinion, and my experience. Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. Considering trip to Mayo Hi- I am new to this group. I have been been struggling with a neurological condition for 14 years. At first it was thought to be MS and about 5 years ago I was diagnosed with PLS. My only form of treatment is exercie and Baclofen. I am finding walking more difficult and am thinking I should go to Mayo to be sure of diagnosis and to get advice on other treatments. Where I currently live is in North Dakota and neurologists come and go at the clinic I am at. I would appreciate any advice or suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 I have had PLS for well over 30 years, dx in 1986. I was also told the same thing as you, and have been on Baclofan since day one. I commend your doctor for being, what I feel is totally honest, as there is a NO other treatment for PLS. If you feel the dx is a firm dx, then don't spend your time and effort running from this doc to that doc, and the end result is the same. Listen to your body and don't push yourself to do what you can't do, and do what you can do. I am almost 70 and still drive, and do a lot that I still can do. This disease slows you down, but it doesn't stop you. It will if you let it. Just my opinion, and my experience. Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. Considering trip to Mayo Hi- I am new to this group. I have been been struggling with a neurological condition for 14 years. At first it was thought to be MS and about 5 years ago I was diagnosed with PLS. My only form of treatment is exercie and Baclofen. I am finding walking more difficult and am thinking I should go to Mayo to be sure of diagnosis and to get advice on other treatments. Where I currently live is in North Dakota and neurologists come and go at the clinic I am at. I would appreciate any advice or suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 I have had PLS for well over 30 years, dx in 1986. I was also told the same thing as you, and have been on Baclofan since day one. I commend your doctor for being, what I feel is totally honest, as there is a NO other treatment for PLS. If you feel the dx is a firm dx, then don't spend your time and effort running from this doc to that doc, and the end result is the same. Listen to your body and don't push yourself to do what you can't do, and do what you can do. I am almost 70 and still drive, and do a lot that I still can do. This disease slows you down, but it doesn't stop you. It will if you let it. Just my opinion, and my experience. Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. Considering trip to Mayo Hi- I am new to this group. I have been been struggling with a neurological condition for 14 years. At first it was thought to be MS and about 5 years ago I was diagnosed with PLS. My only form of treatment is exercie and Baclofen. I am finding walking more difficult and am thinking I should go to Mayo to be sure of diagnosis and to get advice on other treatments. Where I currently live is in North Dakota and neurologists come and go at the clinic I am at. I would appreciate any advice or suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi, I have had PLS for 10 years, diagnosed 6 yrs. ago by a neurologist at the Mayo Clinic. His name is ph Matsumoto M.D. and beyond being very knowledgable, he is kind & compassionate. If you would like the phone number, let me know. Lana, in Minnesota > > Hi- I am new to this group. I have been been struggling with a > neurological condition for 14 years. At first it was thought to be MS > and about 5 years ago I was diagnosed with PLS. My only form of > treatment is exercie and Baclofen. I am finding walking more > difficult and am thinking I should go to Mayo to be sure of diagnosis > and to get advice on other treatments. Where I currently live is in > North Dakota and neurologists come and go at the clinic I am at. I > would appreciate any advice or suggestions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi, I have had PLS for 10 years, diagnosed 6 yrs. ago by a neurologist at the Mayo Clinic. His name is ph Matsumoto M.D. and beyond being very knowledgable, he is kind & compassionate. If you would like the phone number, let me know. Lana, in Minnesota > > Hi- I am new to this group. I have been been struggling with a > neurological condition for 14 years. At first it was thought to be MS > and about 5 years ago I was diagnosed with PLS. My only form of > treatment is exercie and Baclofen. I am finding walking more > difficult and am thinking I should go to Mayo to be sure of diagnosis > and to get advice on other treatments. Where I currently live is in > North Dakota and neurologists come and go at the clinic I am at. I > would appreciate any advice or suggestions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi, I have had PLS for 10 years, diagnosed 6 yrs. ago by a neurologist at the Mayo Clinic. His name is ph Matsumoto M.D. and beyond being very knowledgable, he is kind & compassionate. If you would like the phone number, let me know. Lana, in Minnesota > > Hi- I am new to this group. I have been been struggling with a > neurological condition for 14 years. At first it was thought to be MS > and about 5 years ago I was diagnosed with PLS. My only form of > treatment is exercie and Baclofen. I am finding walking more > difficult and am thinking I should go to Mayo to be sure of diagnosis > and to get advice on other treatments. Where I currently live is in > North Dakota and neurologists come and go at the clinic I am at. I > would appreciate any advice or suggestions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi Sunsetsunrise! (Not sure of your name) Glad you have contacted this group! This is an awesome group. I have learned SO much and had so much support....and laughs! I always think a second opinion is a good one....and at a clinic that has several neurologists well experienced with rare neurological disorders. I started having symptoms..umm...9 or 10 years ago. First it was 'fibromyalgia'.....years later, when i got worse...they thought maybe MS. Then, 2 1/2 years ago, i was sent to Foothills Neurological in Calgary ( I live in Canada). I saw 3 neurologists and they all agreed on PLS. Mine is moving faster now than it used to. The last 3 years i went from limping ( and falling), to being in a wheelchair 1/2 the time...and using a walker the other 1/2. I have symptoms in much of my body now, including my voice and diaphragm....bu that has just been in the last couple of years. I am 48....so my symtoms started in my late 30s...maybe even earlier. I HAVE noticed that everybody is different. Some have had it for 25 years and just use a cane.....others have different issues. But we are ALL TOGETHER in this group...........so glad you are with us! There are no dumb questions! Take care Di....PLS.... Alberta, Canada > > Hi- I am new to this group. I have been been struggling with a > neurological condition for 14 years. At first it was thought to be MS > and about 5 years ago I was diagnosed with PLS. My only form of > treatment is exercie and Baclofen. I am finding walking more > difficult and am thinking I should go to Mayo to be sure of diagnosis > and to get advice on other treatments. Where I currently live is in > North Dakota and neurologists come and go at the clinic I am at. I > would appreciate any advice or suggestions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi Sunsetsunrise! (Not sure of your name) Glad you have contacted this group! This is an awesome group. I have learned SO much and had so much support....and laughs! I always think a second opinion is a good one....and at a clinic that has several neurologists well experienced with rare neurological disorders. I started having symptoms..umm...9 or 10 years ago. First it was 'fibromyalgia'.....years later, when i got worse...they thought maybe MS. Then, 2 1/2 years ago, i was sent to Foothills Neurological in Calgary ( I live in Canada). I saw 3 neurologists and they all agreed on PLS. Mine is moving faster now than it used to. The last 3 years i went from limping ( and falling), to being in a wheelchair 1/2 the time...and using a walker the other 1/2. I have symptoms in much of my body now, including my voice and diaphragm....bu that has just been in the last couple of years. I am 48....so my symtoms started in my late 30s...maybe even earlier. I HAVE noticed that everybody is different. Some have had it for 25 years and just use a cane.....others have different issues. But we are ALL TOGETHER in this group...........so glad you are with us! There are no dumb questions! Take care Di....PLS.... Alberta, Canada > > Hi- I am new to this group. I have been been struggling with a > neurological condition for 14 years. At first it was thought to be MS > and about 5 years ago I was diagnosed with PLS. My only form of > treatment is exercie and Baclofen. I am finding walking more > difficult and am thinking I should go to Mayo to be sure of diagnosis > and to get advice on other treatments. Where I currently live is in > North Dakota and neurologists come and go at the clinic I am at. I > would appreciate any advice or suggestions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi Sunsetsunrise! (Not sure of your name) Glad you have contacted this group! This is an awesome group. I have learned SO much and had so much support....and laughs! I always think a second opinion is a good one....and at a clinic that has several neurologists well experienced with rare neurological disorders. I started having symptoms..umm...9 or 10 years ago. First it was 'fibromyalgia'.....years later, when i got worse...they thought maybe MS. Then, 2 1/2 years ago, i was sent to Foothills Neurological in Calgary ( I live in Canada). I saw 3 neurologists and they all agreed on PLS. Mine is moving faster now than it used to. The last 3 years i went from limping ( and falling), to being in a wheelchair 1/2 the time...and using a walker the other 1/2. I have symptoms in much of my body now, including my voice and diaphragm....bu that has just been in the last couple of years. I am 48....so my symtoms started in my late 30s...maybe even earlier. I HAVE noticed that everybody is different. Some have had it for 25 years and just use a cane.....others have different issues. But we are ALL TOGETHER in this group...........so glad you are with us! There are no dumb questions! Take care Di....PLS.... Alberta, Canada > > Hi- I am new to this group. I have been been struggling with a > neurological condition for 14 years. At first it was thought to be MS > and about 5 years ago I was diagnosed with PLS. My only form of > treatment is exercie and Baclofen. I am finding walking more > difficult and am thinking I should go to Mayo to be sure of diagnosis > and to get advice on other treatments. Where I currently live is in > North Dakota and neurologists come and go at the clinic I am at. I > would appreciate any advice or suggestions. > Quote Link to comment Share on other sites More sharing options...
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