Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Gosh Mike, I'm so glad I asked this question. It's good to know I'm not alone. I'm so glad you've been so stable since 1996, but unfortunately so many are not. After reading everyone's symptoms and experiences, I feel pretty sure I do have PLS, even though I'm hoping the surgeon at Hopkins will say I still have cervical spinal cord compression. We can only wait and hope. Thanks for such a complete answer. And yes, I do keep my mind active. I write educational materials on subjects ranging from volunteerism to the Federal Reserve System (two that I just finished). I have to read and research a great deal to write these, so I'm getting lots of exercise for my brain. edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Gosh Mike, I'm so glad I asked this question. It's good to know I'm not alone. I'm so glad you've been so stable since 1996, but unfortunately so many are not. After reading everyone's symptoms and experiences, I feel pretty sure I do have PLS, even though I'm hoping the surgeon at Hopkins will say I still have cervical spinal cord compression. We can only wait and hope. Thanks for such a complete answer. And yes, I do keep my mind active. I write educational materials on subjects ranging from volunteerism to the Federal Reserve System (two that I just finished). I have to read and research a great deal to write these, so I'm getting lots of exercise for my brain. edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 I've wondered that myself Edith. We have have a lot of people join the group in the past two months. Donna > I've been told that PLS is very rare, that only about 500 people in the US > have it, which adds up to 1 in 10 million. So how come, if it's so rare, so > many people are signing up with PLS Friends as newly diagnosed? And that doesn't > include the people who get a PLS dx and don't join PLS Friends. > > Is PLS becoming the diagnosis of the month? Is it the fallback position when > nothing else fits the symptoms? Just wondering out loud. > > edith > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 I've wondered that myself Edith. We have have a lot of people join the group in the past two months. Donna > I've been told that PLS is very rare, that only about 500 people in the US > have it, which adds up to 1 in 10 million. So how come, if it's so rare, so > many people are signing up with PLS Friends as newly diagnosed? And that doesn't > include the people who get a PLS dx and don't join PLS Friends. > > Is PLS becoming the diagnosis of the month? Is it the fallback position when > nothing else fits the symptoms? Just wondering out loud. > > edith > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Hi Edith personally ive been 3+ yrs. looking for some conclusive dx ive seen 9 neuros and over 30docs. and now my last doc says only probable his partner says yes . as i have heard there is no test for it so it kind of looks like a stab in the dark if noting else fits mine has slurred speech very little balance probs spastic walk and cold liquids choking and cold weather legs freeze up cant walk ive been through all kinds of tests and seem to be in good health oh ive found i get emotional alot but after what ive been through i would think this is normal GEO Re: New Members > > > I've been told that PLS is very rare, that only about 500 people in > the US > > have it, which adds up to 1 in 10 million. So how come, if it's so > rare, so > > many people are signing up with PLS Friends as newly diagnosed? Is > it the fallback position when > > nothing else fits the symptoms? Just wondering out loud. > > > > edith > > > > Hi Edith, > > Yes, you could call it a fallback position. Mark and I have > discussed this issue many times with our Foundation Medical Advisor, > Scientific Board members and other PLS researchers. > > PLS is always a temporary dx at first. It can look just like ALS or > HSP initially. Most everything else can be eliminated through tests > these days, and these are left over. > > The top researchers say it usually takes a few years, and sometimes > five, and in rare cases, 10 years for full PLS symptom expression and > a true diagnosis. Sometimes, it is never clear. > > If it is just involving the legs, neurologists may give an initial > diagnosis of PLS, HSP, SP (when it looks like HSP but there's no > obvious family history to prove it so they don't want to tag on the > Hereditary word), or ALS. If it's just involving the arms or speech, > neurologists may give an initial dx of PLS or ALS. > > So, someone's initial dx has a lot to do with which clinician she or > he sees. Different neurologists can give the same person a different > initial diagnosis. Often, they don't explain that it's a " watch and > see " for a few years. > > The researchers seem to agree that in cases where someone has leg > involvement and no family history and everything else is ruled out, > that most clinicians will give a dx of PLS. > > Hence, there are a lot of people starting out with a PLS dx. > > That said, there is also uncertainty with that " 500 " estimate > number. It is difficult to estimate how many PLSers there really are > because it takes a few years for expression. Dr. Fink, who has > the largest PLS Clinic in this country, says (in his opinion) that he > feels 500 is low. > > Hope that helps, > Kathi > Spastic Paraplegia Foundation, Inc. > www.sp-foundation.org > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Well, as an introduction.. On June 19th, Lou Gehrig's 100th birthday, I was officially diagnosed with ALS. I had two doctor's claim that they believed that I had it before then, but now I have two ALS specialists after June 19th that have stated that I do have it. I've experienced the symptoms before.. and recovered. But this time is a lot worse than in the past. Looking for all of the causes and ways to survive, since I have small children. Wilbur -------------------------------------------- Putting A Human Face On Technology ;-) -------------------------------------------- Literally! http://www.TheFaceOf.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Geo you sound like me. I have the same problems as you do plus slurred speach. Donna > > > I've been told that PLS is very rare, that only about 500 people in > > the US > > > have it, which adds up to 1 in 10 million. So how come, if it's so > > rare, so > > > many people are signing up with PLS Friends as newly diagnosed? Is > > it the fallback position when > > > nothing else fits the symptoms? Just wondering out loud. > > > > > > edith > > > > > > > Hi Edith, > > > > Yes, you could call it a fallback position. Mark and I have > > discussed this issue many times with our Foundation Medical Advisor, > > Scientific Board members and other PLS researchers. > > > > PLS is always a temporary dx at first. It can look just like ALS or > > HSP initially. Most everything else can be eliminated through tests > > these days, and these are left over. > > > > The top researchers say it usually takes a few years, and sometimes > > five, and in rare cases, 10 years for full PLS symptom expression and > > a true diagnosis. Sometimes, it is never clear. > > > > If it is just involving the legs, neurologists may give an initial > > diagnosis of PLS, HSP, SP (when it looks like HSP but there's no > > obvious family history to prove it so they don't want to tag on the > > Hereditary word), or ALS. If it's just involving the arms or speech, > > neurologists may give an initial dx of PLS or ALS. > > > > So, someone's initial dx has a lot to do with which clinician she or > > he sees. Different neurologists can give the same person a different > > initial diagnosis. Often, they don't explain that it's a " watch and > > see " for a few years. > > > > The researchers seem to agree that in cases where someone has leg > > involvement and no family history and everything else is ruled out, > > that most clinicians will give a dx of PLS. > > > > Hence, there are a lot of people starting out with a PLS dx. > > > > That said, there is also uncertainty with that " 500 " estimate > > number. It is difficult to estimate how many PLSers there really are > > because it takes a few years for expression. Dr. Fink, who has > > the largest PLS Clinic in this country, says (in his opinion) that he > > feels 500 is low. > > > > Hope that helps, > > Kathi > > Spastic Paraplegia Foundation, Inc. > > www.sp-foundation.org > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Geo my spinal fluid protein was elevated too. I bite my cheek, my left side locks up in the cold or tense situations, and I strangle on liquids as well. My latest problem is pooling salavia in the corners of my mouth. It must happen when I sleep and I've tried everything to get rid of the chapped, peeling skin and nothing works. I look like Batman's Joker. My diagnosis is PLS/ALS and it will stay that way for two more years. I think (pray) it will change then to PLS. Donna > > > > > I've been told that PLS is very rare, that only about 500 > > people in > > > > the US > > > > > have it, which adds up to 1 in 10 million. So how come, if > > it's so > > > > rare, so > > > > > many people are signing up with PLS Friends as newly > > diagnosed? Is > > > > it the fallback position when > > > > > nothing else fits the symptoms? Just wondering out loud. > > > > > > > > > > edith > > > > > > > > > > > > > Hi Edith, > > > > > > > > Yes, you could call it a fallback position. Mark and I have > > > > discussed this issue many times with our Foundation Medical > > Advisor, > > > > Scientific Board members and other PLS researchers. > > > > > > > > PLS is always a temporary dx at first. It can look just like > > ALS or > > > > HSP initially. Most everything else can be eliminated through > > tests > > > > these days, and these are left over. > > > > > > > > The top researchers say it usually takes a few years, and > > sometimes > > > > five, and in rare cases, 10 years for full PLS symptom > > expression and > > > > a true diagnosis. Sometimes, it is never clear. > > > > > > > > If it is just involving the legs, neurologists may give an > > initial > > > > diagnosis of PLS, HSP, SP (when it looks like HSP but there's no > > > > obvious family history to prove it so they don't want to tag on > > the > > > > Hereditary word), or ALS. If it's just involving the arms or > > speech, > > > > neurologists may give an initial dx of PLS or ALS. > > > > > > > > So, someone's initial dx has a lot to do with which clinician > > she or > > > > he sees. Different neurologists can give the same person a > > different > > > > initial diagnosis. Often, they don't explain that it's a " watch > > and > > > > see " for a few years. > > > > > > > > The researchers seem to agree that in cases where someone has leg > > > > involvement and no family history and everything else is ruled > > out, > > > > that most clinicians will give a dx of PLS. > > > > > > > > Hence, there are a lot of people starting out with a PLS dx. > > > > > > > > That said, there is also uncertainty with that " 500 " estimate > > > > number. It is difficult to estimate how many PLSers there > > really are > > > > because it takes a few years for expression. Dr. Fink, who > > has > > > > the largest PLS Clinic in this country, says (in his opinion) > > that he > > > > feels 500 is low. > > > > > > > > Hope that helps, > > > > Kathi > > > > Spastic Paraplegia Foundation, Inc. > > > > www.sp-foundation.org > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Dear Donna, I have the same problem with saliva pooling in the sides of my mouth at night and during the day. It is so annoying! Especially when you are talking to someone.Or you keep on wiping and it comes back. Fortunately it doesn't happen all the time, every couple of days. The sides of my mouth were really chapped and I had a continual rash. A few months ago I got a Vitamin E cream and it is gone. I am not sure if it is because the cold and dry weather are gone or the vitamin E. Try it is really cheap($3.95) and it works better than my expensive creams. I got it at my local supermarket. I hope you do not have ALS. Take care. Re: New Members Geo my spinal fluid protein was elevated too. I bite my cheek, my left side locks up in the cold or tense situations, and I strangle on liquids as well. My latest problem is pooling salavia in the corners of my mouth. It must happen when I sleep and I've tried everything to get rid of the chapped, peeling skin and nothing works. I look like Batman's Joker. My diagnosis is PLS/ALS and it will stay that way for two more years. I think (pray) it will change then to PLS. Donna > > > > > I've been told that PLS is very rare, that only about 500 > > people in > > > > the US > > > > > have it, which adds up to 1 in 10 million. So how come, if > > it's so > > > > rare, so > > > > > many people are signing up with PLS Friends as newly > > diagnosed? Is > > > > it the fallback position when > > > > > nothing else fits the symptoms? Just wondering out loud. > > > > > > > > > > edith > > > > > > > > > > > > > Hi Edith, > > > > > > > > Yes, you could call it a fallback position. Mark and I have > > > > discussed this issue many times with our Foundation Medical > > Advisor, > > > > Scientific Board members and other PLS researchers. > > > > > > > > PLS is always a temporary dx at first. It can look just like > > ALS or > > > > HSP initially. Most everything else can be eliminated through > > tests > > > > these days, and these are left over. > > > > > > > > The top researchers say it usually takes a few years, and > > sometimes > > > > five, and in rare cases, 10 years for full PLS symptom > > expression and > > > > a true diagnosis. Sometimes, it is never clear. > > > > > > > > If it is just involving the legs, neurologists may give an > > initial > > > > diagnosis of PLS, HSP, SP (when it looks like HSP but there's no > > > > obvious family history to prove it so they don't want to tag on > > the > > > > Hereditary word), or ALS. If it's just involving the arms or > > speech, > > > > neurologists may give an initial dx of PLS or ALS. > > > > > > > > So, someone's initial dx has a lot to do with which clinician > > she or > > > > he sees. Different neurologists can give the same person a > > different > > > > initial diagnosis. Often, they don't explain that it's a " watch > > and > > > > see " for a few years. > > > > > > > > The researchers seem to agree that in cases where someone has leg > > > > involvement and no family history and everything else is ruled > > out, > > > > that most clinicians will give a dx of PLS. > > > > > > > > Hence, there are a lot of people starting out with a PLS dx. > > > > > > > > That said, there is also uncertainty with that " 500 " estimate > > > > number. It is difficult to estimate how many PLSers there > > really are > > > > because it takes a few years for expression. Dr. Fink, who > > has > > > > the largest PLS Clinic in this country, says (in his opinion) > > that he > > > > feels 500 is low. > > > > > > > > Hope that helps, > > > > Kathi > > > > Spastic Paraplegia Foundation, Inc. > > > > www.sp-foundation.org > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Donna i have found when i did bite my cheek when eating i would park some food over there on the side between the cheek and gum and then chew on the other side and walla it worked .(masters of make do) i asked a doctor about that saliva and he said we unconciously swallow evey 2 minutes did some research on saliva and found just thinking about food can make saliva and also emotions can start it i found when i first started all this i had fasculations (twitching ) but since have stopped that .i found out that being upset started that .The only skin probs. i have is Psoriasis this all started with Psoriasis and the flu first .so i think that my immune system started attacking my body but docs. dont know alot about autoimmune so they say no .I also found a way to handle the cold liquids i take in a sml. amount and warm it up in my mouth i beleive that it must shock the system and cause a spasm in the throat so try warming it up around the tongue and then swallow >My doc said he doesnt know why my CSF protein was high is looking into it ive read some on the reseacrh PLS and they mention something of a protein called Glutamine being in excess but im not telling him because he will say oh yah thats what it is . i want him to show me he is working on my case so i think you have to be careful what you tell them .GEO Re: New Members > Geo my spinal fluid protein was elevated too. I bite my cheek, my > left side locks up in the cold or tense situations, and I strangle > on liquids as well. My latest problem is pooling salavia in the > corners of my mouth. It must happen when I sleep and I've tried > everything to get rid of the chapped, peeling skin and nothing > works. I look like Batman's Joker. > My diagnosis is PLS/ALS and it will stay that way for two more > years. I think (pray) it will change then to PLS. > Donna > > > > > > > > I've been told that PLS is very rare, that only about 500 > > > people in > > > > > the US > > > > > > have it, which adds up to 1 in 10 million. So how come, if > > > it's so > > > > > rare, so > > > > > > many people are signing up with PLS Friends as newly > > > diagnosed? Is > > > > > it the fallback position when > > > > > > nothing else fits the symptoms? Just wondering out loud. > > > > > > > > > > > > edith > > > > > > > > > > > > > > > > Hi Edith, > > > > > > > > > > Yes, you could call it a fallback position. Mark and I have > > > > > discussed this issue many times with our Foundation Medical > > > Advisor, > > > > > Scientific Board members and other PLS researchers. > > > > > > > > > > PLS is always a temporary dx at first. It can look just like > > > ALS or > > > > > HSP initially. Most everything else can be eliminated > through > > > tests > > > > > these days, and these are left over. > > > > > > > > > > The top researchers say it usually takes a few years, and > > > sometimes > > > > > five, and in rare cases, 10 years for full PLS symptom > > > expression and > > > > > a true diagnosis. Sometimes, it is never clear. > > > > > > > > > > If it is just involving the legs, neurologists may give an > > > initial > > > > > diagnosis of PLS, HSP, SP (when it looks like HSP but > there's no > > > > > obvious family history to prove it so they don't want to tag > on > > > the > > > > > Hereditary word), or ALS. If it's just involving the arms or > > > speech, > > > > > neurologists may give an initial dx of PLS or ALS. > > > > > > > > > > So, someone's initial dx has a lot to do with which clinician > > > she or > > > > > he sees. Different neurologists can give the same person a > > > different > > > > > initial diagnosis. Often, they don't explain that it's > a " watch > > > and > > > > > see " for a few years. > > > > > > > > > > The researchers seem to agree that in cases where someone > has leg > > > > > involvement and no family history and everything else is > ruled > > > out, > > > > > that most clinicians will give a dx of PLS. > > > > > > > > > > Hence, there are a lot of people starting out with a PLS dx. > > > > > > > > > > That said, there is also uncertainty with that " 500 " estimate > > > > > number. It is difficult to estimate how many PLSers there > > > really are > > > > > because it takes a few years for expression. Dr. Fink, > who > > > has > > > > > the largest PLS Clinic in this country, says (in his opinion) > > > that he > > > > > feels 500 is low. > > > > > > > > > > Hope that helps, > > > > > Kathi > > > > > Spastic Paraplegia Foundation, Inc. > > > > > www.sp-foundation.org > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 Thanks for your good wishes and I'll try the Vit. E. Thanks, Donna > > > > > > I've been told that PLS is very rare, that only about 500 > > > people in > > > > > the US > > > > > > have it, which adds up to 1 in 10 million. So how come, if > > > it's so > > > > > rare, so > > > > > > many people are signing up with PLS Friends as newly > > > diagnosed? Is > > > > > it the fallback position when > > > > > > nothing else fits the symptoms? Just wondering out loud. > > > > > > > > > > > > edith > > > > > > > > > > > > > > > > Hi Edith, > > > > > > > > > > Yes, you could call it a fallback position. Mark and I have > > > > > discussed this issue many times with our Foundation Medical > > > Advisor, > > > > > Scientific Board members and other PLS researchers. > > > > > > > > > > PLS is always a temporary dx at first. It can look just like > > > ALS or > > > > > HSP initially. Most everything else can be eliminated > through > > > tests > > > > > these days, and these are left over. > > > > > > > > > > The top researchers say it usually takes a few years, and > > > sometimes > > > > > five, and in rare cases, 10 years for full PLS symptom > > > expression and > > > > > a true diagnosis. Sometimes, it is never clear. > > > > > > > > > > If it is just involving the legs, neurologists may give an > > > initial > > > > > diagnosis of PLS, HSP, SP (when it looks like HSP but > there's no > > > > > obvious family history to prove it so they don't want to tag > on > > > the > > > > > Hereditary word), or ALS. If it's just involving the arms or > > > speech, > > > > > neurologists may give an initial dx of PLS or ALS. > > > > > > > > > > So, someone's initial dx has a lot to do with which clinician > > > she or > > > > > he sees. Different neurologists can give the same person a > > > different > > > > > initial diagnosis. Often, they don't explain that it's > a " watch > > > and > > > > > see " for a few years. > > > > > > > > > > The researchers seem to agree that in cases where someone > has leg > > > > > involvement and no family history and everything else is > ruled > > > out, > > > > > that most clinicians will give a dx of PLS. > > > > > > > > > > Hence, there are a lot of people starting out with a PLS dx. > > > > > > > > > > That said, there is also uncertainty with that " 500 " estimate > > > > > number. It is difficult to estimate how many PLSers there > > > really are > > > > > because it takes a few years for expression. Dr. Fink, > who > > > has > > > > > the largest PLS Clinic in this country, says (in his opinion) > > > that he > > > > > feels 500 is low. > > > > > > > > > > Hope that helps, > > > > > Kathi > > > > > Spastic Paraplegia Foundation, Inc. > > > > > www.sp-foundation.org > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2010 Report Share Posted November 10, 2010 Seeing that we have a new member whose husband has recently been diagnosed, I thought I might post an item that I used to post fairly regularly in the past whenever I saw that we had a new member. This is what the post says: Welcome to the Prostate Cancer Support Forum. This can be a frightening time and it is important to bear in mind what Dr Jon Oppenheimer, one of the leading pathologists in the US has to say on his blog at http://theprostateblog.blogspot.com/ For the vast majority of men with a recent diagnosis of prostate cancer the most important question is not what treatment is needed, but whether any treatment at all is required. Active surveillance is the logical choice for most men (and the families that love them) to make. You might find it useful to visit YANA - You Are Not Alone Now www.yananow.net a site set up for newly diagnosed people. The first section gives some basic information in plain language with links to more complex and technical sites. There is one link to the NCCN Guidelines at http://www.nccn.org/professionals/physician_gls/f_guidelines.asp - downloading those guidelines will give you a good decision path. Many people have found that the booklet “A Strange Place” has been helpful – that’s at http://www.yananow.net/StrangePlace/index.html There is also a section with resources specifically for women at http://www.yananow.net/ProstateCancerWomen.htm The second section of the site is where men are invited to tell their prostate cancer stories and how they arrived at their decisions regarding treatment. Many people have mailed to say how useful they have found this, especially because most of the men are happy to respond to specific questions. The section of the site can be found by clicking the link labelled Experiences or going to http://www.yananow.net/Experiences.html There is a section dealing with the management of the disease, including some dietary hints at http://www.yananow.net/MyersManagement.htm there is also a section suggesting the questions that you should seek answers to before making any treatment decision at http://www.yananow.net/questions.htm But in any event, please post some details of you/your husband’s diagnosis – Age, PSAs leading up to the diagnosis, Gleason Score and Staging (these terms are all explained on the YANA site) and any questions you might have. Just remember – there are no dumb questions. We all started off where you are now, but we’ve collectively learned a lot over the years. All the best Prostate men need enlightening, not frightening Terry Herbert - diagnosed in 1996 and still going strong Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html Quote Link to comment Share on other sites More sharing options...
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