Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 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 4, 2003 Report Share Posted July 4, 2003 Thanks Kathi. Your explanation is a big help as I embark on this journey of getting a dx. I'll keep you posted. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 > 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 4, 2003 Report Share Posted July 4, 2003 Edith, This is a good wondering out loud topic. I work in the Mental Health field and know that when our psychiatrists had had a workshop presented by a pharmaceutical company, all the diagnoses for the next month were predominately the one they had just been taught. Even when they were wrong. Also, something comes along that is very popular for some time and it is the diagnosis for quite a while. Two of the more recent ones are Borderline Personality Disorder and ADHD. Many of our newer patients have these diagnoses. Right now, we have no permanent psychiatrist on my unit and the ones who cover are usually there for about one to two months. Most of them have been in private practice and now just want out from under all the paperwork and insurance fees. They disagree with many of our diagnoses, but are not allowed to change them. Two of them, one just out of his residency, said we really needed to get more accurate diagnoses for our patients. He was able to change 3 of them, but backed them up with data from their charts and his observations of their current behavior. The other was really knowledgeable about his field and a great teaching psychiatrist. He is the only one who has ever told us the distinction between the different drugs and the side effects they cause. He told us in one Team Meeting after the patient had left why she was on the wrong medication for her side effects and that that particular side effect only appeared with this medication. His explanation was excellent and, being the obsessive-compulsive I can sometimes be, I checked it out. He was right. The reason for this long explanation is to give an example of what you are wondering about. I have a hunch that many neurologists who are just learning about PLS are putting some people in diagnostic category until it can be ruled out. This leads to poor treatment or no treatment. I'm not even certain I have PLS, but my neurologist is absolutely certain. He is just amazed that I have been fairly stable since he first met me in 1996. We are both waiting for the other shoe to drop. I hope the person with the shoes only had one leg. I, too, have noticed how many people have signed up recently. I believe that in May of this year alone, there were at least 5 or 6. This is highly unusual. Only time will tell. One thing for certain is that many people are developing motor neuron diseases at a rapid pace, much more so than 10 years ago. Or, this may just be because of the technology age and more are being reported and picked up sooner. Information is passed along more quickly now. I hope this technology moves quickly toward a cure for all MND's. Keep wondering. It's healthy for your brain to be active, Mike wisecom77@... wrote: >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 Mike i think your right about them throwing it in my Neuro starte dme on Baclofen and i went from 10mg in the morning 5mg at noon and 10mg at bedtime up to 30mg 3 times a day (90) where as at first no change in spasticity to going to Emergency with breathing and nausea at 90 now back to 20 mg a day and still no indication of it doing any good (no changes ) i do beleive im on the wrong Meds they told me at the hosp. that it was the Meds that cause my problem GEO Re: New Members > Edith, > > This is a good wondering out loud topic. I work in the Mental Health > field and know that when our psychiatrists had had a workshop presented > by a pharmaceutical company, all the diagnoses for the next month were > predominately the one they had just been taught. Even when they were > wrong. Also, something comes along that is very popular for some time > and it is the diagnosis for quite a while. Two of the more recent ones > are Borderline Personality Disorder and ADHD. Many of our newer patients > have these diagnoses. Right now, we have no permanent psychiatrist on my > unit and the ones who cover are usually there for about one to two > months. Most of them have been in private practice and now just want out > from under all the paperwork and insurance fees. They disagree with many > of our diagnoses, but are not allowed to change them. Two of them, one > just out of his residency, said we really needed to get more accurate > diagnoses for our patients. He was able to change 3 of them, but backed > them up with data from their charts and his observations of their > current behavior. The other was really knowledgeable about his field and > a great teaching psychiatrist. He is the only one who has ever told us > the distinction between the different drugs and the side effects they > cause. He told us in one Team Meeting after the patient had left why she > was on the wrong medication for her side effects and that that > particular side effect only appeared with this medication. His > explanation was excellent and, being the obsessive-compulsive I can > sometimes be, I checked it out. He was right. > > The reason for this long explanation is to give an example of what you > are wondering about. I have a hunch that many neurologists who are just > learning about PLS are putting some people in diagnostic category until > it can be ruled out. This leads to poor treatment or no treatment. I'm > not even certain I have PLS, but my neurologist is absolutely certain. > He is just amazed that I have been fairly stable since he first met me > in 1996. We are both waiting for the other shoe to drop. I hope the > person with the shoes only had one leg. I, too, have noticed how many > people have signed up recently. I believe that in May of this year > alone, there were at least 5 or 6. This is highly unusual. Only time > will tell. One thing for certain is that many people are developing > motor neuron diseases at a rapid pace, much more so than 10 years ago. > Or, this may just be because of the technology age and more are being > reported and picked up sooner. Information is passed along more quickly > now. I hope this technology moves quickly toward a cure for all MND's. > > Keep wondering. It's healthy for your brain to be active, > > Mike > > wisecom77@... wrote: > > >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 Mike im the same i havent changed in 3+ years my speech is still slurred at the same degree my balance is the same if not better in the hot weather ,biting my cheeks when eating is almost gone .and choking on cold liquids is better problably because i drink slower .I find that warm weather i do alot better but for the most part no change that is why i beleive mine all started with the flu then i noticed Psoriasis which i never had before and my Arthritis i truly think there is an autoimmune problem here but all my tests come back showing normal .I had a spinal tap done at Mayo and they never told me my Protein (CSF) was high 75 so i looked up Chronic Inflammatory Polyneuropathy which i told my doc and he dismissed it so im pushing for Plasmapheresis and IVIG GEO Re: New Members > 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 Hi Donna i think you are the first parson i wrote when i started the group ..mine all started in 2000 with the flu and then my wife said my speech was slurred and then i noticed choking on cold liquids and then balance(not real bad )biting my cheeks when eating . i cant run , my right side freezes up in cold weather (cant walk ) my symptoms havent really changed much since i would say i dont bite my cheeks when eating and i do drink slower so i dont choke i dont choke on my saliva . but ive read that people that clear there throat alot have swallowing problems i think from time to time we all do that .I beleive that since i have Psoriasis and arthritis also that autoimmune is at work here and i had a spinal tap at Mayo and my CSF protein was 75 where 14-45 is normal so i found Chronic Inflammatory Polyneuropathy which fits me but my Neuro says that they arent spatic but i read muscle contractions and i thought spasticity and contraction of mucle were the same was your dx for sure or probable GEO Re: New Members > 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 November 11, 2010 Report Share Posted November 11, 2010 (snip) > .........He opted out of another > biopsy since what they saw was so small clipping part of it would > be close to impossible...and he said the biopsy was painful! No > reason to fish around and maybe find something and maybe not. > So, today he started hormones for 2 months and then radiation for > two months....this keeps him out of work for close to 6 months... > he is 61. PSA 3 weeks ago was 2. Daisy, there is absolutely no reason that the biopsy should have been painful -- other than the urologist's lack of concern with a patient's comfort. The simple solution is to require that the area be anesthetized. And I mean *require*. Be stubborn, even unpleasant if necessary. The uro is Husband's employee. I don't quite follow why Husband should be off work while on ADT and radiation. BTW, what is the nature of the " hormones? " And how to they know where to direct the radiation, which is a local treatment? Is the source of the PSA specifically located? Regards, Steve J " Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis. " --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled " The Empowered Patient's Guide. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2010 Report Share Posted November 11, 2010 FYI for similar reasons I was unable to work for portions of my treatment and I was able to collect short term disability until I was able to get back to work. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer Sent: Thursday, November 11, 2010 6:55 PM To: ProstateCancerSupport Subject: Re: New Members daisy petty wrote: > The radiation treatments are every day 5 days a week. There is > one reason. Main reason is the FAA grounds pilots until > treatment is complete. That's a bummer, but I guess it's understandable. Is he grounded during the hormone treatment too, or only during the actual radiation? I can see how flying during the radiation in impossible because of the problem of flight schedules and overnight stays at destination cities interfering with the radiation appointments. Would there be any hope if he asked the airline for a ground based job during the treatment? If not, will they give him at least partial pay or help him get workman's compensation? During my radiation treatments I went to work every day. I got treated as early as possible in the morning, then arrived at work an hour or so later than normal and stayed later to make up the time. I didn't have any real problems. Incidentally and on a different topic, even if there were no metal clips in his body it's my understanding that proton beam treatment is never used for salvage radiation, only for primary treatment. For technical reasons that I can guess at but don't really know, I think they only use x-rays for salvage radiation. Best of luck with his treatment. Alan P.S. I once met a couple of airline pilots and families from Houston on an Alaska cruise sometime around May 23-30, 2000. We sat at the same dinner table. That wouldn't have happened to be you folks would it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2010 Report Share Posted November 11, 2010 Sorry, it was not us on an Alaskan cruise! We moved to Houston a year ago. Red tape is the deal with not flying. 10 days after receiving a hormone shot he can apply with the FAA to get his FAA issued medical license back/reactivated. That can take approximately 5 weeks. He cannot fly while receiving radiation. He has sick leave that will cover a lot of the time off, then he will do the disability part. Kind of a catch 22 since by the time he got his license reissued he would be just about ready for radiation. Guess the best is to do all this one day at a time... To: ProstateCancerSupport Sent: Thu, November 11, 2010 5:55:19 PMSubject: Re: New Members daisy petty wrote:> The radiation treatments are every day 5 days a week. There is> one reason. Main reason is the FAA grounds pilots until> treatment is complete.That's a bummer, but I guess it's understandable. Is he groundedduring the hormone treatment too, or only during the actualradiation? I can see how flying during the radiation inimpossible because of the problem of flight schedules andovernight stays at destination cities interfering with theradiation appointments.Would there be any hope if he asked the airline for a groundbased job during the treatment? If not, will they give him atleast partial pay or help him get workman's compensation?During my radiation treatments I went to work every day. I gottreated as early as possible in the morning, then arrived at workan hour or so later than normal and stayed later to make up thetime. I didn't have any real problems.Incidentally and on a different topic, even if there were nometal clips in his body it's my understanding that proton beamtreatment is never used for salvage radiation, only for primarytreatment. For technical reasons that I can guess at but don'treally know, I think they only use x-rays for salvage radiation.Best of luck with his treatment.AlanP.S. I once met a couple of airline pilots and families fromHouston on an Alaska cruise sometime around May 23-30, 2000. Wesat at the same dinner table. That wouldn't have happened to beyou folks would it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2010 Report Share Posted November 11, 2010 Hello Daisy, Knowing your husband is a pilot changes our recommendations. I’ve known other pilots having the same problem. Certainly makes it tough. Wishing you both the best and early return of your husband to likely his passion – soaring through the skies. Chuck " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack/Prostate Cancer Advocate/Mentor Wichita, Kansas Chapter, Us TOOBiography: http://www.ustoowichita.org/leaders.cfm?content=bio & id=1 Email: maack1@... Chapter Website " Observations " : http://www.ustoowichita.org/observations.cfm From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of daisy pettySent: Thursday, November 11, 2010 9:20 PMTo: ProstateCancerSupport Subject: Re: New Members Sorry, it was not us on an Alaskan cruise! We moved to Houston a year ago. Red tape is the deal with not flying. 10 days after receiving a hormone shot he can apply with the FAA to get his FAA issued medical license back/reactivated. That can take approximately 5 weeks. He cannot fly while receiving radiation. He has sick leave that will cover a lot of the time off, then he will do the disability part. Kind of a catch 22 since by the time he got his license reissued he would be just about ready for radiation. Guess the best is to do all this one day at a time... To: ProstateCancerSupport Sent: Thu, November 11, 2010 5:55:19 PMSubject: Re: New Members daisy petty wrote:> The radiation treatments are every day 5 days a week. There is> one reason. Main reason is the FAA grounds pilots until> treatment is complete.That's a bummer, but I guess it's understandable. Is he groundedduring the hormone treatment too, or only during the actualradiation? I can see how flying during the radiation inimpossible because of the problem of flight schedules andovernight stays at destination cities interfering with theradiation appointments.Would there be any hope if he asked the airline for a groundbased job during the treatment? If not, will they give him atleast partial pay or help him get workman's compensation?During my radiation treatments I went to work every day. I gottreated as early as possible in the morning, then arrived at workan hour or so later than normal and stayed later to make up thetime. I didn't have any real problems.Incidentally and on a different topic, even if there were nometal clips in his body it's my understanding that proton beamtreatment is never used for salvage radiation, only for primarytreatment. For technical reasons that I can guess at but don'treally know, I think they only use x-rays for salvage radiation.Best of luck with his treatment.AlanP.S. I once met a couple of airline pilots and families fromHouston on an Alaska cruise sometime around May 23-30, 2000. Wesat at the same dinner table. That wouldn't have happened to beyou folks would it? Quote Link to comment Share on other sites More sharing options...
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