Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hello everyone, My name is . I don't have PLS, but I have a friend who was just diagnosed with it yesterday. I am currently on a fact-finding mission for her. She doesn't have internet access right now and I feel so helpless trying to comfort her when I know almost nothing myself about what she is going through. Does anyone have any suggestions on where we go from here? What we can expect? Should she be getting a second opinion? From the reading on PLS I've done since yesterday, it sounds like PLS is extremely rare, so I'm wondering how good any one doctor can be at identifying it for sure, but I am totally new to all this, so what do I know? I just want to be able to support my friend and find good information for her, so if anyone can point me in the right direction that would be so helpful. I thank you so much for your time. A bit about her: she's in her 50's and has had problems with spasms in her feet, then legs, now back, for about 18 months, maybe 2 years. At first she was diagnosed with plantar faciitis and had the surgery on her feet to try to correct it after trying every orthotic ever made and getting no relief. Her pain is so intense she can barely sleep, and almost no pain meds have offered any relief. She finally got so exasperated that her feet doctors weren't helping that she insisted her regular internal medicine doctor refer her to our local university hospital to see a neurologist. He did a couple of MRIs and a electrogram test, I forget what it's called exactly. That's how he came up with her diagnosis...he said it's a dx of exclusion and ruling out everything else it could be. But then I read on the internet last night that if you've had symptoms for less than 3 years it could still turn out to be ALS, but he told her she didn't have ALS and that her breathing wasn't involved and wouldn't be. I certainly hope he turns out to be correct on that one. I appreciate your time so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi , What a nice friend you are. You've found the right place and yes, we are a rare group, although we seem to have more and more newly diagnosed PLSers sign on regularly. On PLS-Friends, we have over 600 registered so we do know quite a bit. We like to think by sharing and comparing, we know more than most doctors, plus we can educate our doctors also. When your friend meets one or more of us in person, she'll not feel as rare. Most of us have gone the route of many doctors, MRIs, EMGs, spinal taps, etc. We all progress differently so it's hard to say how she'll progress. We have (what we call) Connections all over the country. Where does your friend live? We may know someone in her area. You can check to see if anyone has registered on this website -- _http://www.geocities.com/freyerse/plsdb.html_ (http://www.geocities.com/freyerse/plsdb.html) We are very involved in fundraising for research and raising awareness. Last year we were able to provide over $500,000 for research grants and this year we will be granting over $400,000 so we are serious about helping ourselves. Along with Connections, we have TeamWalks for our Cures which you can read about those on our website -- _www.sp-foundation.org_ (http://www.sp-foundation.org) . Our National Conference was held in Columbus, OH last year. Welcome to our world and please continue to ask questions. Gentner, PLS CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 In a message dated 3/9/2006 12:05:45 PM Eastern Standard Time, Lkgentner@... writes: We are very involved in fundraising for research and raising awareness. Last year we were able to provide over $500,000 for research grants and this year we will be granting over $400,000 so we are serious about helping ourselves. Along with Connections, we have TeamWalks for our Cures which you can read about those on our website -- _www.sp-foundation.org_ (http://www.sp-foundation.org) . Our National Conference was held in Columbus, OH last year. How wonderful that you are able to raise money to help with research. I have a daughter who is severely autistic and I can relate to having to take charge yourselves to get research, care and treatments figured out. We have to do that for my daughter too. Ironically, we live in Columbus Ohio. Imagine that the conference was right here. Hopefully that means we have some local professionals who know what they're doing. Does the MDA do any research into PLS? Also, what is the other acronym I am seeing here for another similar disorder? Sorry, I can't remember the initials, but I saw it in the welcome letter I think. I'm off to see if I can find some locals who might be able to help and share with my friend. Thanks so much for the website! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 , Hereditary Spastic Paraplegia (HSP) is our " sister " disorder. I forwarded your email to Margie who has HSP and she and her husband, , were the National Conference coordinators last year so they do have a lot of contacts, probably more with HSP than PLS but I'm sure they could steer you in the right direction. is on our Board of Directors. owns a durable medical supply store in Columbus so he has lots of connections. His store website is: _http://www.midwestmedicalinc.com/_ (http://www.midwestmedicalinc.com/) I'm sorry to learn that you have an autistic daughter -- I understand that too. We have an autistic grandson, who is 3 now, so we are involved in fundraising for that also. It's great of how far autism research has come in the last 10 years. Our son and daughter-in-law are very involved. I'll be " walking " in their local walk-a-thon this year but I'll be walking in my power chair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 In a message dated 3/9/2006 4:03:46 PM Eastern Standard Time, dianamj_canuck@... writes: It is SO IMPORTANT to remember that each person's progression is very different. PLS is characterized by gradual, slow progression. However, some of us have periods of rapid progression...which may last a few months or a few years...then 'plateau'. Some PLSers have had it 20 years and can still walk, maybe with a cane or walker. Each of us is so different. I have painful spasms and so i take Baclofen, with Zanaflex at nighttime. Anyway....welcome! Di......PLS.............Canada Thank you so much to all of you for the warm welcome. My friend, Jo, has a computer, but doesn't have internet access at home. She was getting email while she was at work, but she's been on disability for a few months now because she is barely able to walk anymore. She's had a fairly rapid decrease in her abilities recently. She lives in a second floor apartment and can get up and down them maybe once per day and is using a walker right now. The neuro told her on Wed. that he thinks she has a bit less strength than she did when he saw her a month ago, but he'll need to see her over the long term to say how quickly she is losing strength. I am going to encourage her to get some kind of internet access-she doesn't have a regular phone,just a cell, and now she's majorly stressed about $ since it isn't clear if she'll be able to return to work or not, so I'm not sure if she'll spring for cable modem or not. Everyone who's responded to me is so caring and sweet, I just know it would comfort her to be able to talk to all of you, and I'm going to work on how I can help to make that happen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Welcome Glad you found us. What a great friend you are. My my where do I start. It is highly unusual for the first specialist to DX PLS without hestitation....but it sure beats giving the DX ALS without hesitation which is what happened to me. Many things must be ruled out: MS is ruled out with MRI, spinal tap (oglioclonal bands of protein). myastenia gravis, lupus, lyme's, Stiffman's Syndrome, and leukodystrophies can be tested by labs. Parkinsonism usually requires a PET scan. Even if everything is ruled out the medical guidelines is to wait 3 years (6 if speech is involved) to see if ALS is involved. I hoping another PLSer will throw out the list of web sites we have for you to get the facts. Bottomline: We are them!!! PLS is so rare but this site is a cluster of people with PLS or HSP from the US, Canada, Europe, India, and Australia. We are the PLS Family. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Welcome to the group . As mentioned, we know more than most doctors and what we know is not engraved in stone because everyone is different and we experience things differently at different times of progression. May I refer you to the following site for more information: http://www.rarediseases.org/programs/pls_brochure.html Norton Hello, I'm new here Hello everyone, My name is . I don't have PLS, but I have a friend who was just diagnosed with it yesterday. I am currently on a fact-finding mission for her. She doesn't have internet access right now and I feel so helpless trying to comfort her when I know almost nothing myself about what she is going through. Does anyone have any suggestions on where we go from here? What we can expect? Should she be getting a second opinion? From the reading on PLS I've done since yesterday, it sounds like PLS is extremely rare, so I'm wondering how good any one doctor can be at identifying it for sure, but I am totally new to all this, so what do I know? I just want to be able to support my friend and find good information for her, so if anyone can point me in the right direction that would be so helpful. I thank you so much for your time. A bit about her: she's in her 50's and has had problems with spasms in her feet, then legs, now back, for about 18 months, maybe 2 years. At first she was diagnosed with plantar faciitis and had the surgery on her feet to try to correct it after trying every orthotic ever made and getting no relief. Her pain is so intense she can barely sleep, and almost no pain meds have offered any relief. She finally got so exasperated that her feet doctors weren't helping that she insisted her regular internal medicine doctor refer her to our local university hospital to see a neurologist. He did a couple of MRIs and a electrogram test, I forget what it's called exactly. That's how he came up with her diagnosis...he said it's a dx of exclusion and ruling out everything else it could be. But then I read on the internet last night that if you've had symptoms for less than 3 years it could still turn out to be ALS, but he told her she didn't have ALS and that her breathing wasn't involved and wouldn't be. I certainly hope he turns out to be correct on that one. I appreciate your time so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 When I lived in WV I drove up to Cleveland Clinic and their ALS Clinic which is under the direction of Dr. Pioro. www.ccf.org - then select neurology. PLS is also covered by the ALS Association. I was there for 5 years until I moved to Fl and sure wish I could have packed Pioro and his staff in the moving van. I highly recommend that clinic. The ALS site also has a legal section - very important to read. While a patient is focus on this flood of emotion when a DX is rendered and expecting compassion, corporate USA can do some horrid things to the person while consoling them to their face. Progressive debilitating diseases cost businesses a lot of bucks....so they try to eliminate their risk at the first rumor of such. MDA covers PLS in some locations but not all. I got nothing but run around from MDA while up north. www.alsa.org will also provide info on support groups and ALS Clinics nearer you. www.mda.org has a link to a sister site for ALS and actually has the best (my opinion) description of upper motor neuron function that can be found. By the time you finish all the research into autism and PLS, you'll qualify for a medical degree. lol Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi , PLEASE tell you friend that she is SO welcomed by us....that she is not alone...there are hundreds of us sticking together and helping each other. I didn't see what state you live in. I live in Canada, and if there is a new person in Alberta...I will go and meet them. Maybe the same is possible in the state you are in. If you reeeally want to help your friend....get all your friends together and get her a computer so she can talk to us! As for the second opinion....that is up to her....but I value the opinions of those in this group more than any medical opinion. I am NOT putting the medical profession down. But this IS a rare disease and we are the pioneers. We are the experimental group. I have had PLS for about 10 years. At first I was diagnosed with fibromyalgia....then MS........but in 2004 I was sent to a neurological centre in Calgary where I was seen by 3 separate neurologists. Then they diagnosed PLS. Mine started in my feet and legs............by now it has prgressed to much of my voluntary muscles....including my chest wall. It is SO IMPORTANT to remember that each person's progression is very different. PLS is characterized by gradual, slow progression. However, some of us have periods of rapid progression...which may last a few months or a few years...then 'plateau'. Some PLSers have had it 20 years and can still walk, maybe with a cane or walker. Each of us is so different. I have painful spasms and so i take Baclofen, with Zanaflex at nighttime. Anyway....welcome! Di......PLS.............Canada > > Hello everyone, > > My name is . I don't have PLS, but I have a friend who was just > diagnosed with it yesterday. I am currently on a fact-finding mission for her. She > doesn't have internet access right now and I feel so helpless trying to comfort > her when I know almost nothing myself about what she is going through. > > Does anyone have any suggestions on where we go from here? What we can > expect? Should she be getting a second opinion? From the reading on PLS I've done > since yesterday, it sounds like PLS is extremely rare, so I'm wondering how > good any one doctor can be at identifying it for sure, but I am totally new to > all this, so what do I know? > > I just want to be able to support my friend and find good information for > her, so if anyone can point me in the right direction that would be so helpful. > I thank you so much for your time. A bit about her: she's in her 50's and > has had problems with spasms in her feet, then legs, now back, for about 18 > months, maybe 2 years. At first she was diagnosed with plantar faciitis and had > the surgery on her feet to try to correct it after trying every orthotic > ever made and getting no relief. Her pain is so intense she can barely sleep, > and almost no pain meds have offered any relief. She finally got so exasperated > that her feet doctors weren't helping that she insisted her regular internal > medicine doctor refer her to our local university hospital to see a > neurologist. He did a couple of MRIs and a electrogram test, I forget what it's > called exactly. That's how he came up with her diagnosis...he said it's a dx of > exclusion and ruling out everything else it could be. But then I read on the > internet last night that if you've had symptoms for less than 3 years it could > still turn out to be ALS, but he told her she didn't have ALS and that her > breathing wasn't involved and wouldn't be. I certainly hope he turns out to be > correct on that one. > > I appreciate your time so much. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 , My website might help in some small way. http://spoilingaunty.tripod.com Lynn http://spoilingaunty.tripod.com Hello, I'm new here Hello everyone, My name is . I don't have PLS, but I have a friend who was just diagnosed with it yesterday. I am currently on a fact-finding mission for her. She doesn't have internet access right now and I feel so helpless trying to comfort her when I know almost nothing myself about what she is going through. Does anyone have any suggestions on where we go from here? What we can expect? Should she be getting a second opinion? From the reading on PLS I've done since yesterday, it sounds like PLS is extremely rare, so I'm wondering how good any one doctor can be at identifying it for sure, but I am totally new to all this, so what do I know? I just want to be able to support my friend and find good information for her, so if anyone can point me in the right direction that would be so helpful. I thank you so much for your time. A bit about her: she's in her 50's and has had problems with spasms in her feet, then legs, now back, for about 18 months, maybe 2 years. At first she was diagnosed with plantar faciitis and had the surgery on her feet to try to correct it after trying every orthotic ever made and getting no relief. Her pain is so intense she can barely sleep, and almost no pain meds have offered any relief. She finally got so exasperated that her feet doctors weren't helping that she insisted her regular internal medicine doctor refer her to our local university hospital to see a neurologist. He did a couple of MRIs and a electrogram test, I forget what it's called exactly. That's how he came up with her diagnosis...he said it's a dx of exclusion and ruling out everything else it could be. But then I read on the internet last night that if you've had symptoms for less than 3 years it could still turn out to be ALS, but he told her she didn't have ALS and that her breathing wasn't involved and wouldn't be. I certainly hope he turns out to be correct on that one. I appreciate your time so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi Lynn, Just wanted to let you know I checked out your website & it is great!!! Do you do the updates yourself?? Everyone should check out Lynn's website, I'm very impressed. Best to all Donna HSP Ca Lynn Holmes lynn.holmes@...> wrote: , My website might help in some small way. http://spoilingaunty.tripod.com Lynn http://spoilingaunty.tripod.com Hello, I'm new here Hello everyone, My name is . I don't have PLS, but I have a friend who was just diagnosed with it yesterday. I am currently on a fact-finding mission for her. She doesn't have internet access right now and I feel so helpless trying to comfort her when I know almost nothing myself about what she is going through. Does anyone have any suggestions on where we go from here? What we can expect? Should she be getting a second opinion? From the reading on PLS I've done since yesterday, it sounds like PLS is extremely rare, so I'm wondering how good any one doctor can be at identifying it for sure, but I am totally new to all this, so what do I know? I just want to be able to support my friend and find good information for her, so if anyone can point me in the right direction that would be so helpful. I thank you so much for your time. A bit about her: she's in her 50's and has had problems with spasms in her feet, then legs, now back, for about 18 months, maybe 2 years. At first she was diagnosed with plantar faciitis and had the surgery on her feet to try to correct it after trying every orthotic ever made and getting no relief. Her pain is so intense she can barely sleep, and almost no pain meds have offered any relief. She finally got so exasperated that her feet doctors weren't helping that she insisted her regular internal medicine doctor refer her to our local university hospital to see a neurologist. He did a couple of MRIs and a electrogram test, I forget what it's called exactly. That's how he came up with her diagnosis...he said it's a dx of exclusion and ruling out everything else it could be. But then I read on the internet last night that if you've had symptoms for less than 3 years it could still turn out to be ALS, but he told her she didn't have ALS and that her breathing wasn't involved and wouldn't be. I certainly hope he turns out to be correct on that one. I appreciate your time so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi Lynn, Just wanted to let you know I checked out your website & it is great!!! Do you do the updates yourself?? Everyone should check out Lynn's website, I'm very impressed. Best to all Donna HSP Ca Lynn Holmes lynn.holmes@...> wrote: , My website might help in some small way. http://spoilingaunty.tripod.com Lynn http://spoilingaunty.tripod.com Hello, I'm new here Hello everyone, My name is . I don't have PLS, but I have a friend who was just diagnosed with it yesterday. I am currently on a fact-finding mission for her. She doesn't have internet access right now and I feel so helpless trying to comfort her when I know almost nothing myself about what she is going through. Does anyone have any suggestions on where we go from here? What we can expect? Should she be getting a second opinion? From the reading on PLS I've done since yesterday, it sounds like PLS is extremely rare, so I'm wondering how good any one doctor can be at identifying it for sure, but I am totally new to all this, so what do I know? I just want to be able to support my friend and find good information for her, so if anyone can point me in the right direction that would be so helpful. I thank you so much for your time. A bit about her: she's in her 50's and has had problems with spasms in her feet, then legs, now back, for about 18 months, maybe 2 years. At first she was diagnosed with plantar faciitis and had the surgery on her feet to try to correct it after trying every orthotic ever made and getting no relief. Her pain is so intense she can barely sleep, and almost no pain meds have offered any relief. She finally got so exasperated that her feet doctors weren't helping that she insisted her regular internal medicine doctor refer her to our local university hospital to see a neurologist. He did a couple of MRIs and a electrogram test, I forget what it's called exactly. That's how he came up with her diagnosis...he said it's a dx of exclusion and ruling out everything else it could be. But then I read on the internet last night that if you've had symptoms for less than 3 years it could still turn out to be ALS, but he told her she didn't have ALS and that her breathing wasn't involved and wouldn't be. I certainly hope he turns out to be correct on that one. I appreciate your time so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi Lynn, Just wanted to let you know I checked out your website & it is great!!! Do you do the updates yourself?? Everyone should check out Lynn's website, I'm very impressed. Best to all Donna HSP Ca Lynn Holmes lynn.holmes@...> wrote: , My website might help in some small way. http://spoilingaunty.tripod.com Lynn http://spoilingaunty.tripod.com Hello, I'm new here Hello everyone, My name is . I don't have PLS, but I have a friend who was just diagnosed with it yesterday. I am currently on a fact-finding mission for her. She doesn't have internet access right now and I feel so helpless trying to comfort her when I know almost nothing myself about what she is going through. Does anyone have any suggestions on where we go from here? What we can expect? Should she be getting a second opinion? From the reading on PLS I've done since yesterday, it sounds like PLS is extremely rare, so I'm wondering how good any one doctor can be at identifying it for sure, but I am totally new to all this, so what do I know? I just want to be able to support my friend and find good information for her, so if anyone can point me in the right direction that would be so helpful. I thank you so much for your time. A bit about her: she's in her 50's and has had problems with spasms in her feet, then legs, now back, for about 18 months, maybe 2 years. At first she was diagnosed with plantar faciitis and had the surgery on her feet to try to correct it after trying every orthotic ever made and getting no relief. Her pain is so intense she can barely sleep, and almost no pain meds have offered any relief. She finally got so exasperated that her feet doctors weren't helping that she insisted her regular internal medicine doctor refer her to our local university hospital to see a neurologist. He did a couple of MRIs and a electrogram test, I forget what it's called exactly. That's how he came up with her diagnosis...he said it's a dx of exclusion and ruling out everything else it could be. But then I read on the internet last night that if you've had symptoms for less than 3 years it could still turn out to be ALS, but he told her she didn't have ALS and that her breathing wasn't involved and wouldn't be. I certainly hope he turns out to be correct on that one. I appreciate your time so much. Quote Link to comment Share on other sites More sharing options...
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