Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 HI and welcome and the length of approval time depends on a lot of things but especially Insurance People TN hi everyone > hello to everyone here i just joined.i have been through all doc > appts and just waiting to hear from insurance company i feel as if i > have ants in my pants, how long does it usually take to get approved? > i am getting very excited would someone let me know thanks i look > forward to get to know everyone bye laura > > > To Subscribe to 's weekly FREE Newsletter send an email to GBCookbook-subscribe@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 In a message dated 2/23/2004 10:17:15 PM Eastern Standard Time, PLS-FRIENDS writes: > ...PLS and HSP are the best guesses of my neurogeneticist right now > and it sounds as if they could be correct...so i'm waiting for my > insurance company to agree to pay for the tests! in the meantime i > figure i can talk to you nice people for some support and > commeraderie (did i spell that right?) ask me anything! is there a > chat for this group? HI , Welcome to the online community and sorry for the reason you needed to find us. We do have a Chat Forum. Since our community is so small (and mighty, LOL), we have a scheduled Chat Session every Monday at 8:00 p.m. EST. But anyone can announce a time they'd like to Chat with others and simply make that announcement here and probably others will join you. http://sp-foundation.org/chat.htm As you may have read, PLS and HSP are basically a " diagnosis of exclusion " . It's based on clinical symptoms, ruling things out with similar symptoms through tests (such as MS and ALS), evaluating family history (HSP is hereditary although in recessive forms it skips generations so you don't see a family history in a lot of cases), and observation over time (waiting to see what other symptoms develop). There is limited commercial gene testing for HSP, but it's only testing for a few of the dominant types of HSP (where it passes from a parent to a child). There are at least two dozen types of HSP, all caused by a different gene. So, that means that if you are tested for one of the known HSP genes and the test comes back " negative " , it doesn't mean you don't have HSP, it just means you don't have one of those types. I have a form of HSP but not one of the ones that gene testing is currently able to confirm. Don't know what gene I have. Experts say there are common threads between neurologic disorders - diseases along the motor neuron continuum (PLS, HSP, ALS and others) and even other conditions like spinal cord disorder and Alzeihmers Disease and Huntington's. That's because it's not a matter of the name of the disease, but rather, the biochemical process that is going on. A disease name (likd PLS) only describes a set of clinical symptoms, not the biochemical process beneath those symptoms. There will undoubedly be ripple effects in discoveries. There is so much attention to these conditions that I am hopeful that cures for many will be found. I hope you will be able to attend a Connection event sometime and meet others. You can see our Calendar of Events here: http://sp-foundation.org/calendar.htm best wishes, Kathi www.sp-foundation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 my doctors have ruled out MS (although that DOES run in my family) and they've ruled out pretty much everything else at this point, so here i am! and i too have tested negative for the genes that they have identified and are " testable " for HSP and so we're at a little bit of an impass i guess... ....i already have the baclofen pump and it is helping but i am progressing at the same time...and the docs say that even with the definite diiagnosis of PLS or whatever it is that i am getting the same treatment OF THE SYMPTOMS...so any ideas of what to do now? just adapt and get on with it? i guess that's why i''m here to get everyone else's take on things...thanks again in advance... rachel > In a message dated 2/23/2004 10:17:15 PM Eastern Standard Time, > PLS-FRIENDS writes: > > > > ...PLS and HSP are the best guesses of my neurogeneticist right now > > and it sounds as if they could be correct...so i'm waiting for my > > insurance company to agree to pay for the tests! in the meantime i > > figure i can talk to you nice people for some support and > > commeraderie (did i spell that right?) ask me anything! is there a > > chat for this group? > > HI , > > Welcome to the online community and sorry for the reason you needed to find > us. We do have a Chat Forum. Since our community is so small (and mighty, > LOL), we have a scheduled Chat Session every Monday at 8:00 p.m. EST. But anyone > can announce a time they'd like to Chat with others and simply make that > announcement here and probably others will join you. > http://sp-foundation.org/chat.htm > > As you may have read, PLS and HSP are basically a " diagnosis of exclusion " . > It's based on clinical symptoms, ruling things out with similar symptoms > through tests (such as MS and ALS), evaluating family history (HSP is hereditary > although in recessive forms it skips generations so you don't see a family > history in a lot of cases), and observation over time (waiting to see what other > symptoms develop). > > There is limited commercial gene testing for HSP, but it's only testing for a > few of the dominant types of HSP (where it passes from a parent to a child). > There are at least two dozen types of HSP, all caused by a different gene. > So, that means that if you are tested for one of the known HSP genes and the > test comes back " negative " , it doesn't mean you don't have HSP, it just means > you don't have one of those types. I have a form of HSP but not one of the > ones that gene testing is currently able to confirm. Don't know what gene I > have. > > Experts say there are common threads between neurologic disorders - diseases > along the motor neuron continuum (PLS, HSP, ALS and others) and even other > conditions like spinal cord disorder and Alzeihmers Disease and Huntington's. > That's because it's not a matter of the name of the disease, but rather, the > biochemical process that is going on. A disease name (likd PLS) only describes > a set of clinical symptoms, not the biochemical process beneath those > symptoms. There will undoubedly be ripple effects in discoveries. There is so much > attention to these conditions that I am hopeful that cures for many will be > found. > > I hope you will be able to attend a Connection event sometime and meet > others. You can see our Calendar of Events here: > http://sp-foundation.org/calendar.htm > > best wishes, > Kathi > www.sp-foundation.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 my doctors have ruled out MS (although that DOES run in my family) and they've ruled out pretty much everything else at this point, so here i am! and i too have tested negative for the genes that they have identified and are " testable " for HSP and so we're at a little bit of an impass i guess... ....i already have the baclofen pump and it is helping but i am progressing at the same time...and the docs say that even with the definite diiagnosis of PLS or whatever it is that i am getting the same treatment OF THE SYMPTOMS...so any ideas of what to do now? just adapt and get on with it? i guess that's why i''m here to get everyone else's take on things...thanks again in advance... rachel > In a message dated 2/23/2004 10:17:15 PM Eastern Standard Time, > PLS-FRIENDS writes: > > > > ...PLS and HSP are the best guesses of my neurogeneticist right now > > and it sounds as if they could be correct...so i'm waiting for my > > insurance company to agree to pay for the tests! in the meantime i > > figure i can talk to you nice people for some support and > > commeraderie (did i spell that right?) ask me anything! is there a > > chat for this group? > > HI , > > Welcome to the online community and sorry for the reason you needed to find > us. We do have a Chat Forum. Since our community is so small (and mighty, > LOL), we have a scheduled Chat Session every Monday at 8:00 p.m. EST. But anyone > can announce a time they'd like to Chat with others and simply make that > announcement here and probably others will join you. > http://sp-foundation.org/chat.htm > > As you may have read, PLS and HSP are basically a " diagnosis of exclusion " . > It's based on clinical symptoms, ruling things out with similar symptoms > through tests (such as MS and ALS), evaluating family history (HSP is hereditary > although in recessive forms it skips generations so you don't see a family > history in a lot of cases), and observation over time (waiting to see what other > symptoms develop). > > There is limited commercial gene testing for HSP, but it's only testing for a > few of the dominant types of HSP (where it passes from a parent to a child). > There are at least two dozen types of HSP, all caused by a different gene. > So, that means that if you are tested for one of the known HSP genes and the > test comes back " negative " , it doesn't mean you don't have HSP, it just means > you don't have one of those types. I have a form of HSP but not one of the > ones that gene testing is currently able to confirm. Don't know what gene I > have. > > Experts say there are common threads between neurologic disorders - diseases > along the motor neuron continuum (PLS, HSP, ALS and others) and even other > conditions like spinal cord disorder and Alzeihmers Disease and Huntington's. > That's because it's not a matter of the name of the disease, but rather, the > biochemical process that is going on. A disease name (likd PLS) only describes > a set of clinical symptoms, not the biochemical process beneath those > symptoms. There will undoubedly be ripple effects in discoveries. There is so much > attention to these conditions that I am hopeful that cures for many will be > found. > > I hope you will be able to attend a Connection event sometime and meet > others. You can see our Calendar of Events here: > http://sp-foundation.org/calendar.htm > > best wishes, > Kathi > www.sp-foundation.org > > > > Quote Link to comment Share on other sites More sharing options...
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