Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Another question for everyone. So, how do they "doctors" determine that it is ALS instead of PLS? I am confused. I know through this group that PLS can progress in varying degrees, and also affect all of us in many different ways. I also know thru my neuro that PLS is diagnosed by eliminating most other motor neuron diseases. So, does something show up on a test when it is ALS? Thanks Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Hi everyone, Some of you know me from so kindly participating in our research studies here at Northwestern, and some of you I haven't met. I'm the nurse with the Neuromuscular Disorders Program out here. The main difference between ALS and PLS is that PLS is a disorder that affects the upper motor neurons, or those nerve cells that do between the area called the motor cortex in the brain down to either the brainstem or spinal cord. Upper motor neurons are the first of the nerves required for us to execute what are known as voluntary movements, such as chewing, swallowing, walking, reaching, etc. ALS affects the upper motor neurons, but it also affects the lower motor neurons, which are the ones that go out from either the brainstem or the spinal cord to give the final set of directions to the muscle that it should work now. EMG and nerve conduction studies can demonstrate problems in either or both types of neuron. There are some pretty tight criteria that must be met (called el Escorial criteria) before a person can be said to have ALS. They include EMG evidence of damage to both upper and lower motor neurons and a history of progression of the symptoms. There also has to be an ABSENCE of EMG evidence that some other disorder could account for these symptoms and test results, and a similar absence of evidence in neuroimaging studies (CT, MRI). There are differences in symptoms people experience according to whether the upper or lower motor neurons are affected. Upper motor neuron problems cause weakness, spasticity, and hyperactive reflexes (too much response when tapped with the little hammer). These are the symptoms you all know only too well. When there is lower motor neuron damage, people do have weakness, but they also have wasting (atrophy is the 50 cent word), twitching (fasciculation is the fancy word here), and either markedly reduced or absent reflexes when tapped with the hammer. Hope this makes things clearer. If not, let me know, and I'll try again. Nailah At 08:40 AM 09/21/2000 -0700, you wrote: Laurel My doctor told me ALS is confirmed by detoriateing EMG results out 4 emges I have had 3 considered abnormal and one cosidered within normal range.However the one considered normal was not the same as technicians point of veiw so who knows in my case things are still undecided and I hang in limbo with dx of probable motor meuron disease possile PLS/ALS Jerry Laurel Aasland wrote: > > [eGroups] My Groups | PLS-FRIENDS Main Page | Start a new group! > > Another question for everyone. So, how do they " doctors " > determinethat it is ALS instead of PLS? I am confused. I know > through thisgroup that PLS can progress in varying degrees, and also > affect allof us in many different ways. I also know thru my neuro > that PLS isdiagnosed by eliminating most other motor neuron diseases. > So,does something show up on a test when it is ALS?ThanksLaurel > > > Laurel My doctor told me ALS is confirmed by detoriateing EMG results out 4 emges I have had 3 considered abnormal and one cosidered within normal range.However the one considered normal was not the same as technicians point of veiw so who knows in my case things are still undecided and I hang in limbo with dx of probable motor meuron disease possile PLS/ALS Jerry Laurel Aasland wrote: Another question for everyone. So, how do they " doctors " determinethat it is ALS instead of PLS? I am confused. I know through thisgroup that PLS can progress in varying degrees, and also affect allof us in many different ways. I also know thru my neuro that PLS isdiagnosed by eliminating most other motor neuron diseases. So,does something show up on a test when it is ALS?ThanksLaurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Laurel My doctor told me ALS is confirmed by detoriateing EMG results out 4 emges I have had 3 considered abnormal and one cosidered within normal range.However the one considered normal was not the same as technicians point of veiw so who knows in my case things are still undecided and I hang in limbo with dx of probable motor meuron disease possile PLS/ALS Jerry Laurel Aasland wrote: Another question for everyone. So, how do they "doctors" determinethat it is ALS instead of PLS? I am confused. I know through thisgroup that PLS can progress in varying degrees, and also affect allof us in many different ways. I also know thru my neuro that PLS isdiagnosed by eliminating most other motor neuron diseases. So,does something show up on a test when it is ALS?ThanksLaurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Nailah, Thanks so much for that very clear descriptions of the difference between ALS/PLS. Could I copy it and use it on the PLS Awareness website? I think it is the best (easiest to understand) description I've seen. Also, my mom and I sent our bloodwork in on Tuesday. You should have rec'd it yesterday, but the family history was not included, I'll send it on this week. With all the new people online, would you want to send us an update on what your study is all about? I have a page on the PLS Awareness site that anyone can go to and I think still has info on the PLS Website, but for new people they might not have gotten that far. , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Nailah, Thanks so much for that very clear descriptions of the difference between ALS/PLS. Could I copy it and use it on the PLS Awareness website? I think it is the best (easiest to understand) description I've seen. Also, my mom and I sent our bloodwork in on Tuesday. You should have rec'd it yesterday, but the family history was not included, I'll send it on this week. With all the new people online, would you want to send us an update on what your study is all about? I have a page on the PLS Awareness site that anyone can go to and I think still has info on the PLS Website, but for new people they might not have gotten that far. , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2000 Report Share Posted September 21, 2000 Thank you so much for taking the time to elaborate on the differences. This disease is such a mystery, and we don't understand everything there is to understand. I think that applies to the medical profession also, God knows they try. Thanks again! Rita DiClemente Hollis, NH ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2000 Report Share Posted September 22, 2000 Laurel, I think we have all come to accept that so many doctors are unfamiliar with PLS but I don't think any of us can accept their lack of chairside manner. In 1997 my first diagnosis was ALS. This came from a neuro at Loyola University Hospital. He came to this diagnosis from the results of a muscle biopsy. Luckily he sent me to North Western University Hosp.where I like say, I got a reprieve. Three years later I am still holding on to the PLS diagnosis. (I have had speech and swallowing problems since 97 and will have my first botox treatment Oct. 2nd.) Let's pray for a reprieve for ... > Laurel Aasland wrote: > > > > > > > [eGroups] My Groups | PLS-FRIENDS Main Page | Start a new > group! > > > > Another question for everyone. So, how do they " doctors " > > determinethat it is ALS instead of PLS? I am confused. I know > > through thisgroup that PLS can progress in varying degrees, and also > > affect allof us in many different ways. I also know thru my neuro > > that PLS isdiagnosed by eliminating most other motor neuron diseases. > > So,does something show up on a test when it is ALS?ThanksLaurel > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 , I'm glad it was clear, and you're welcome to it. The only thing I didn't really get into is how separate or not separate the 2 disorders are, which as you know is about as clear as mud. (which is why I didn't ) If you give me a couple days (to finish up some of my endless list making --providing the bench researchers with various types of samples that they want) I will tally up what we've got in terms of PLS samples and let you know. Probably the most exciting thing though is not how many we have, but rather this new technology that lets us screen lots of samples for mutations in candidate genes is going to allow us to put all our PLS samples in, too. So we may get something that way. Talk to you more in a day or 2. You should have gotten another note in the meantime saying we did get your samples. Thanks for all your hard work! Nailah At 12:28 PM 09/21/2000 -0700, you wrote: My Groups | PLS-FRIENDS Main Page | Start a new group! Nailah, Thanks so much for that very clear descriptions of the difference between ALS/PLS. Could I copy it and use it on the PLS Awareness website? I think it is the best (easiest to understand) description I've seen. Also, my mom and I sent our bloodwork in on Tuesday. You should have rec'd it yesterday, but the family history was not included, I'll send it on this week. With all the new people online, would you want to send us an update on what your study is all about? I have a page on the PLS Awareness site that anyone can go to and I think still has info on the PLS Website, but for new people they might not have gotten that far. , Quote Link to comment Share on other sites More sharing options...
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