Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Hi Kathy, I tried to find out last weekend on the youngest PLS onset. It is a tricky question as there is juvenile onset. Since nobody reports PLS cases anywhere for statistical data, it really isn't known. The youngest reported is 20 if you are talking about the adult onset. It is all a big question mark at this time. Maybe soon they will start some kind of statistical records. I've never heard of PLS causing spine deterioration. But I could imagine the other way around happening. Can they do anything to help the spine from deteriorating more? Is it a bone density issue? Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Re: Re: MDA , Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 Hi Kathy, I tried to find out last weekend on the youngest PLS onset. It is a tricky question as there is juvenile onset. Since nobody reports PLS cases anywhere for statistical data, it really isn't known. The youngest reported is 20 if you are talking about the adult onset. It is all a big question mark at this time. Maybe soon they will start some kind of statistical records. I've never heard of PLS causing spine deterioration. But I could imagine the other way around happening. Can they do anything to help the spine from deteriorating more? Is it a bone density issue? Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Re: Re: MDA , Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Hi Kathy, I have several medical journal articles on juvenile onset PLS which answer your questions. They are not pleasant. Many will find the following information depressing. The first article (M.L. Grunnet et al., " Primary Lateral Sclerosis in a child " , Neurology, 1989;39, 1530-1532.) reports an infant who developed symptoms between 9 - 10 months of age. Symptoms initially presented as progressive weakness of his left arm and leg. Symptoms progressed rapidly. By 14 months of age, he had trouble swallowing, his gag reflex was difficult to elicit, and he could no longer support his head. By age 16 months, he became more rigid and weak and could not lift his head off the bed. He continued to deteriorate...At age 47 months he died of pneumonia. Drs. Lerman-Sagie et al (in " Infantile Onset of Hereditary Ascending Spastic Paralysis with Bulbar Involvement " , J. Child Neurol, 1996 Jan;11(1):54-7) report a Kuwaiti family in which 3 sons developed progressive paralysis of the lower limbs in infancy (11, 11 and 3 months respectively). The oldest boy lost the ability to walk at age 2, and the ability to talk by age 7. Drs. G.G. Gascon, T. Siddique et al (in Familial Childhood Primary Lateral Sclerosis with Associated Gaze Paresis " , Neuropediatrics 26 (1995) 313-319.) report 3 children from a Jordanian family with PLS. The oldest girl had difficulty walking by age 2, stopped walking by age 3, and began to lose speech by age 10. Her brother began to have difficulty walking at age 1 and was in a wheelchair at age 7. He could no longer speak by age 12. His younger brother never could walk and began to lose his speech at age 2. He speech could not be understood by age 10. These juvenile onset PLS cases appear to be very severe. Not only is onset very early, but progression is rapid. Mark Weber > Hi Kathy, > I tried to find out last weekend on the youngest PLS onset. It is a tricky question as there is juvenile onset. Since nobody reports PLS cases anywhere for statistical data, it really isn't known. The youngest reported is 20 if you are talking about the adult onset. > It is all a big question mark at this time. Maybe soon they will start some kind of statistical records. > I've never heard of PLS causing spine deterioration. But I could imagine the other way around happening. Can they do anything to help the spine from deteriorating more? Is it a bone density issue? > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > Re: Re: MDA > > > , > Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine > came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Thank you so much for your research. It is so hard to believe that children that small should suffer so much. The first time I was in a supply store (for assist devices) I saw a small walker. I cried for days. Thanks again, kathy markw732 wrote: > Hi Kathy, > > I have several medical journal articles on juvenile onset PLS which > answer your questions. They are not pleasant. Many will find the > following information depressing. > > The first article (M.L. Grunnet et al., " Primary Lateral Sclerosis in > a child " , Neurology, 1989;39, 1530-1532.) reports an infant who > developed symptoms between 9 - 10 months of age. Symptoms initially > presented as progressive weakness of his left arm and leg. Symptoms > progressed rapidly. By 14 months of age, he had trouble swallowing, > his gag reflex was difficult to elicit, and he could no longer support > his head. By age 16 months, he became more rigid and weak and could > not lift his head off the bed. He continued to deteriorate...At age > 47 months he died of pneumonia. > > Drs. Lerman-Sagie et al (in " Infantile Onset of Hereditary Ascending > Spastic Paralysis with Bulbar Involvement " , J. Child Neurol, 1996 > Jan;11(1):54-7) report a Kuwaiti family in which 3 sons developed > progressive paralysis of the lower limbs in infancy (11, 11 and 3 > months respectively). The oldest boy lost the ability to walk at age > 2, and the ability to talk by age 7. > > Drs. G.G. Gascon, T. Siddique et al (in Familial Childhood Primary > Lateral Sclerosis with Associated Gaze Paresis " , Neuropediatrics 26 > (1995) 313-319.) report 3 children from a Jordanian family with PLS. > The oldest girl had difficulty walking by age 2, stopped walking by > age 3, and began to lose speech by age 10. Her brother began to have > difficulty walking at age 1 and was in a wheelchair at age 7. He > could no longer speak by age 12. His younger brother never could walk > and began to lose his speech at age 2. He speech could not be > understood by age 10. > > These juvenile onset PLS cases appear to be very severe. Not only is > onset very early, but progression is rapid. > > Mark Weber > > > > Hi Kathy, > > I tried to find out last weekend on the youngest PLS onset. It is a > tricky question as there is juvenile onset. Since nobody reports PLS > cases anywhere for statistical data, it really isn't known. The > youngest reported is 20 if you are talking about the adult onset. > > It is all a big question mark at this time. Maybe soon they will > start some kind of statistical records. > > I've never heard of PLS causing spine deterioration. But I could > imagine the other way around happening. Can they do anything to help > the spine from deteriorating more? Is it a bone density issue? > > Thomson > > Solana Beach, Ca > > Visit www.als-pls.org > > and www.geocities.com/mdmfoo/pls.html > > > > Re: Re: MDA > > > > > > , > > Can you tell me what, if known, is the youngest PLS onset? I > was 15 years old when my 'complications' started. They thought that > maybe I had MS because I had a second cousin who was diagnosed with > MS. In the end they called it spastic paraparesis. In 1997, my current > neurologist gave me a diagnosis of PLS. Also, my spine is > deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. > In 1989, I broke my leg in two places and still have the rod and > pins in the leg (I wasn't even having a good time when it happened). > It is hard for me and maybe unnecessary to distinguish what pain > belongs to what. Anyway, I have always wondered if the deteriorating spine > > came first or the PLS or are they the same thing. Can you provide > any data? Thanks. kathy hillary > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Thank you so much for your research. It is so hard to believe that children that small should suffer so much. The first time I was in a supply store (for assist devices) I saw a small walker. I cried for days. Thanks again, kathy markw732 wrote: > Hi Kathy, > > I have several medical journal articles on juvenile onset PLS which > answer your questions. They are not pleasant. Many will find the > following information depressing. > > The first article (M.L. Grunnet et al., " Primary Lateral Sclerosis in > a child " , Neurology, 1989;39, 1530-1532.) reports an infant who > developed symptoms between 9 - 10 months of age. Symptoms initially > presented as progressive weakness of his left arm and leg. Symptoms > progressed rapidly. By 14 months of age, he had trouble swallowing, > his gag reflex was difficult to elicit, and he could no longer support > his head. By age 16 months, he became more rigid and weak and could > not lift his head off the bed. He continued to deteriorate...At age > 47 months he died of pneumonia. > > Drs. Lerman-Sagie et al (in " Infantile Onset of Hereditary Ascending > Spastic Paralysis with Bulbar Involvement " , J. Child Neurol, 1996 > Jan;11(1):54-7) report a Kuwaiti family in which 3 sons developed > progressive paralysis of the lower limbs in infancy (11, 11 and 3 > months respectively). The oldest boy lost the ability to walk at age > 2, and the ability to talk by age 7. > > Drs. G.G. Gascon, T. Siddique et al (in Familial Childhood Primary > Lateral Sclerosis with Associated Gaze Paresis " , Neuropediatrics 26 > (1995) 313-319.) report 3 children from a Jordanian family with PLS. > The oldest girl had difficulty walking by age 2, stopped walking by > age 3, and began to lose speech by age 10. Her brother began to have > difficulty walking at age 1 and was in a wheelchair at age 7. He > could no longer speak by age 12. His younger brother never could walk > and began to lose his speech at age 2. He speech could not be > understood by age 10. > > These juvenile onset PLS cases appear to be very severe. Not only is > onset very early, but progression is rapid. > > Mark Weber > > > > Hi Kathy, > > I tried to find out last weekend on the youngest PLS onset. It is a > tricky question as there is juvenile onset. Since nobody reports PLS > cases anywhere for statistical data, it really isn't known. The > youngest reported is 20 if you are talking about the adult onset. > > It is all a big question mark at this time. Maybe soon they will > start some kind of statistical records. > > I've never heard of PLS causing spine deterioration. But I could > imagine the other way around happening. Can they do anything to help > the spine from deteriorating more? Is it a bone density issue? > > Thomson > > Solana Beach, Ca > > Visit www.als-pls.org > > and www.geocities.com/mdmfoo/pls.html > > > > Re: Re: MDA > > > > > > , > > Can you tell me what, if known, is the youngest PLS onset? I > was 15 years old when my 'complications' started. They thought that > maybe I had MS because I had a second cousin who was diagnosed with > MS. In the end they called it spastic paraparesis. In 1997, my current > neurologist gave me a diagnosis of PLS. Also, my spine is > deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. > In 1989, I broke my leg in two places and still have the rod and > pins in the leg (I wasn't even having a good time when it happened). > It is hard for me and maybe unnecessary to distinguish what pain > belongs to what. Anyway, I have always wondered if the deteriorating spine > > came first or the PLS or are they the same thing. Can you provide > any data? Thanks. kathy hillary > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Hi , There is nothing they can do for the deterioration. My neurologist does monitor it but he already told me there is nothing that can be done to stop the deterioration. It is also hard to know what started first for me, the deterioration or the PLS. If PLS is what I have. I read the information sent to me regarding HSP/PLS chart. Like I said, at first they thought I had MS but were doubtful as I was only 15. The hospital in Madison, WI (it's a research hospital) some doctors felt it was MS, others didn't. When I went to Scripps in La Jolla, CA, the doctor there said it definitly wasn't MS. I also went to Cedars in LA but can't remember what they decided. So, I guess in the end it doesn't really matter 'cuz there is nothing they can do to turn back the hands of time. Will go as cheerfully as possible into an uncertain future. Thanks for the info. kathy Thomson wrote: > Hi Kathy, > I tried to find out last weekend on the youngest PLS onset. It is a tricky question as there is juvenile onset. Since nobody reports PLS cases anywhere for statistical data, it really isn't known. The youngest reported is 20 if you are talking about the adult onset. > It is all a big question mark at this time. Maybe soon they will start some kind of statistical records. > I've never heard of PLS causing spine deterioration. But I could imagine the other way around happening. Can they do anything to help the spine from deteriorating more? Is it a bone density issue? > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > Re: Re: MDA > > , > Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine > came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Hi , There is nothing they can do for the deterioration. My neurologist does monitor it but he already told me there is nothing that can be done to stop the deterioration. It is also hard to know what started first for me, the deterioration or the PLS. If PLS is what I have. I read the information sent to me regarding HSP/PLS chart. Like I said, at first they thought I had MS but were doubtful as I was only 15. The hospital in Madison, WI (it's a research hospital) some doctors felt it was MS, others didn't. When I went to Scripps in La Jolla, CA, the doctor there said it definitly wasn't MS. I also went to Cedars in LA but can't remember what they decided. So, I guess in the end it doesn't really matter 'cuz there is nothing they can do to turn back the hands of time. Will go as cheerfully as possible into an uncertain future. Thanks for the info. kathy Thomson wrote: > Hi Kathy, > I tried to find out last weekend on the youngest PLS onset. It is a tricky question as there is juvenile onset. Since nobody reports PLS cases anywhere for statistical data, it really isn't known. The youngest reported is 20 if you are talking about the adult onset. > It is all a big question mark at this time. Maybe soon they will start some kind of statistical records. > I've never heard of PLS causing spine deterioration. But I could imagine the other way around happening. Can they do anything to help the spine from deteriorating more? Is it a bone density issue? > Thomson > Solana Beach, Ca > Visit www.als-pls.org > and www.geocities.com/mdmfoo/pls.html > > Re: Re: MDA > > , > Can you tell me what, if known, is the youngest PLS onset? I was 15 years old when my 'complications' started. They thought that maybe I had MS because I had a second cousin who was diagnosed with MS. In the end they called it spastic paraparesis. In 1997, my current neurologist gave me a diagnosis of PLS. Also, my spine is deteriorating; I received a diagnosis of Rheumatoid Arthritis in 1998. In 1989, I broke my leg in two places and still have the rod and pins in the leg (I wasn't even having a good time when it happened). It is hard for me and maybe unnecessary to distinguish what pain belongs to what. Anyway, I have always wondered if the deteriorating spine > came first or the PLS or are they the same thing. Can you provide any data? Thanks. kathy hillary > > Quote Link to comment Share on other sites More sharing options...
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