Guest guest Posted June 27, 2006 Report Posted June 27, 2006 Several people have talked about numbness and their doctors not answering their concerns. That to me is wrong, just don't understand that. Someone that has it can be VERY alarmed about it. Back in the beginning my neurologist always asked every time I went if I felt numbness. I didn't so I never asked why he asked, I know I should have but back then I was in shock at what was happening to me. I'd what a doctor who really cared about his patience's not just dismiss my symptoms. Just sticking my nose in where it dosen't belong........................Flora Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 I think the questions on numbness are to help distinguish PLS from MS. PLS being a MOTOR neurone disease should not have any sensory involvement such as numbness, whereas often in MS people initially only notice numbness or pins and needles etc.. I have seen people on here mention numbness etc but given what physically happens to the motor neurones in PLS I don't believe any numbness is due directly to it but to another issue. belgium46@... wrote: >Several people have talked about numbness and their doctors not answering >their concerns. That to me is wrong, just don't understand that. Someone that >has it can be VERY alarmed about it. Back in the beginning my neurologist >always asked every time I went if I felt numbness. I didn't so I never asked >why he asked > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 I think the questions on numbness are to help distinguish PLS from MS. PLS being a MOTOR neurone disease should not have any sensory involvement such as numbness, whereas often in MS people initially only notice numbness or pins and needles etc.. I have seen people on here mention numbness etc but given what physically happens to the motor neurones in PLS I don't believe any numbness is due directly to it but to another issue. belgium46@... wrote: >Several people have talked about numbness and their doctors not answering >their concerns. That to me is wrong, just don't understand that. Someone that >has it can be VERY alarmed about it. Back in the beginning my neurologist >always asked every time I went if I felt numbness. I didn't so I never asked >why he asked > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 I think the questions on numbness are to help distinguish PLS from MS. PLS being a MOTOR neurone disease should not have any sensory involvement such as numbness, whereas often in MS people initially only notice numbness or pins and needles etc.. I have seen people on here mention numbness etc but given what physically happens to the motor neurones in PLS I don't believe any numbness is due directly to it but to another issue. belgium46@... wrote: >Several people have talked about numbness and their doctors not answering >their concerns. That to me is wrong, just don't understand that. Someone that >has it can be VERY alarmed about it. Back in the beginning my neurologist >always asked every time I went if I felt numbness. I didn't so I never asked >why he asked > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 IT WAS THE SAME WAY WITH ME. AT FIRST, EVERY TIME I WENT TO THE CLINIC THAT WAS THE FIRST THING THAT THEY WOULD ASKED ME. NOW THAT ALMOST TEN YRS. HAS GONE BY, THEY NEVER ASK THAT QUESTION ANYMORE. I THINK WHAT THEY WERE LOOKING FOR WAS ALS. DENISE FROM GA. > > From: belgium46@... > Date: 2006/06/27 Tue AM 09:17:40 EDT > To: PLS-FRIENDS > Subject: Re: plsers/numbness > > Several people have talked about numbness and their doctors not answering > their concerns. That to me is wrong, just don't understand that. Someone that > has it can be VERY alarmed about it. Back in the beginning my neurologist > always asked every time I went if I felt numbness. I didn't so I never asked > why he asked, I know I should have but back then I was in shock at what was > happening to me. I'd what a doctor who really cared about his patience's not > just dismiss my symptoms. Just sticking my nose in where it dosen't > belong........................Flora > > > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 , What you say is absolutely true about distinguishing MS from PLS. EXCEPT there can be varients of PLS. I do happen to have proven mild sensory involvement and my doc has always said it is a varient form of PLS. Still, it always left a question mark in my mind because i 'knew' sensory should have NO place in a PLS diagnosis. Then I read the partial abstract from Mark Weber posted here that his doctor, Gordon, wrote up describing some of the variations of PLS - the 4th one includes sensory involvement. Now i have even more confidence in my doctor for recognizing this. Colleen > > I think the questions on numbness are to help distinguish PLS from MS. > PLS being a MOTOR neurone disease should not have any sensory > involvement such as numbness, whereas often in MS people initially only > notice numbness or pins and needles etc.. I have seen people on here > mention numbness etc but given what physically happens to the motor > neurones in PLS I don't believe any numbness is due directly to it but > to another issue. > > > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 , it happens Re: plsers/numbness To: PLS-FRIENDS > I think the questions on numbness are to help distinguish PLS from > MS. > PLS being a MOTOR neurone disease should not have any sensory > involvement such as numbness, whereas often in MS people initially > only > notice numbness or pins and needles etc.. I have seen people on > here > mention numbness etc but given what physically happens to the > motor > neurones in PLS I don't believe any numbness is due directly to it > but > to another issue. > > > > belgium46@... wrote: > > >Several people have talked about numbness and their doctors not > answering > >their concerns. That to me is wrong, just don't understand > that. Someone that > >has it can be VERY alarmed about it. Back in the beginning my > neurologist > >always asked every time I went if I felt numbness. I didn't so > I never asked > >why he asked > > > > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 Colleen, When was the abstract, by Gorden, you refer to below posted on PLS-friends? I would like to read it, but don't know how to find it. I have the burning, tingling and numbness. I have asked my Doctor about it as well and have never had this concern addressed by him, nor do I see it addressed on PLS information websites. Thanks, Jen Colleen wrote: > , > > What you say is absolutely true about distinguishing MS from PLS. > EXCEPT there can be varients of PLS. I do happen to have proven mild > sensory involvement and my doc has always said it is a varient form of > PLS. Still, it always left a question mark in my mind because i > 'knew' sensory should have NO place in a PLS diagnosis. Then I read > the partial abstract from Mark Weber posted here that his doctor, > Gordon, wrote up describing some of the variations of PLS - the 4th > one includes sensory involvement. Now i have even more confidence in > my doctor for recognizing this. > > Colleen > > > > > > I think the questions on numbness are to help distinguish PLS from MS. > > PLS being a MOTOR neurone disease should not have any sensory > > involvement such as numbness, whereas often in MS people initially only > > notice numbness or pins and needles etc.. I have seen people on here > > mention numbness etc but given what physically happens to the motor > > neurones in PLS I don't believe any numbness is due directly to it but > > to another issue. > > > > > > > > > >------------------------------------------------------------------------ > >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.1.394 / Virus Database: 268.9.5/377 - Release Date: 6/27/2006 > > Quote
Guest guest Posted June 27, 2006 Report Posted June 27, 2006 Add a comment to this, science doesn't know much about the human brain or actually how it operates, so they really with PLS being " rare " don't know what it's going to effect or what it is going to destroy. They just play it by ear, keep a record of everyone they come in contact with who has it and guess. So to me it's hard to say it won't effect this but it will that but each of us are showing different signs. I'm truely beginning to believe PLS is a catch all disorder that should say we don't know what the Hell it is.At least with ALS they can say, your dead, take out a life insurance policy and prepare for your funeral. With PLS, since it is " rare " , all they can do is scratch their heads, if you die from it they say, ooppps we made a misdiagnosis, it was ALS. So, until they can come up with a firm diagnosis, disease and symptoms, I wouldn't doupt if someone said it made them bald. My 2 cents worth Re: plsers/numbness To: PLS-FRIENDS > , > > What you say is absolutely true about distinguishing MS from PLS. > EXCEPT there can be varients of PLS. I do happen to have proven mild > sensory involvement and my doc has always said it is a varient > form of > PLS. Still, it always left a question mark in my mind because i > 'knew' sensory should have NO place in a PLS diagnosis. Then I read > the partial abstract from Mark Weber posted here that his doctor, > Gordon, wrote up describing some of the variations of PLS - the 4th > one includes sensory involvement. Now i have even more confidence in > my doctor for recognizing this. > > Colleen > > > > > > I think the questions on numbness are to help distinguish PLS > from MS. > > PLS being a MOTOR neurone disease should not have any sensory > > involvement such as numbness, whereas often in MS people > initially only > > notice numbness or pins and needles etc.. I have seen people on > here > > mention numbness etc but given what physically happens to the > motor > > neurones in PLS I don't believe any numbness is due directly to > it but > > to another issue. > > > > > > > > > > > Quote
Guest guest Posted June 28, 2006 Report Posted June 28, 2006 Colleen, OK, I've learned something new for today thanks! :-) Colleen wrote: >, > >What you say is absolutely true about distinguishing MS from PLS. >EXCEPT there can be varients of PLS. I do happen to have proven mild >sensory involvement and my doc has always said it is a varient form of >PLS. Still, it always left a question mark in my mind because i >'knew' sensory should have NO place in a PLS diagnosis. Then I read >the partial abstract from Mark Weber posted here that his doctor, >Gordon, wrote up describing some of the variations of PLS - the 4th >one includes sensory involvement. Now i have even more confidence in >my doctor for recognizing this. > >Colleen > > Quote
Guest guest Posted June 28, 2006 Report Posted June 28, 2006 Jen, It is message number 52056 (March 20, 2006) but am copying its context below: " The just read a copy of the full text of " The natural history of PLS " by Gordon, MD et al. (When I post research articles, they are merely copies of abstracts of the articles, from PubMed.gov. ) The article makes several points that PLSers will find most interesting. Dr. Gordon (who, incidentally, is currently my neurologist) divides what we all call PLS into 4 diagnostic categories: 1. Autopsy proven PLS – clinically diagnosed PLS with no loss of lower motor neurons shown at autopsy 2. Clinically pure PLS – evident upper motor neuron signs, no focal muscle atrophy and no denervation in EMG 4 years from symptom onset. Age at onset after 40. 3. Upper motor neuron (UMN) dominant ALS – symptoms less than 4 years, or disability due predominantly to UMN signs but with minor EMG denervation or lower motor neuron signs on examination, not sufficient to meet diagnostic criteria for ALS. 4. PLS Plus – Predominantly UMN signs but also clinical, laboratory, or pathological evidence of dementia, parkinsonism, or sensory tract abnormalities. Obviously, no one reading this is in category 1. A diagnosis of " clinically pure PLS " takes 4 years to obtain, since symptoms could change to either HSP or ALS. During the 4 years before a " clinically pure PLS " diagnosis can be made, the diagnosis is " upper motor neuron dominant ALS " . If there is no clinical or laboratory evidence of lower motor neuron damage after 4 years, then the diagnosis changes to " clinically pure PLS " . If there is clinical or laboratory evidence of lower motor neuron damage after 4 years, then the diagnosis remains " upper motor neuron dominant ALS " . Obviously, we prognosis for " upper motor neuron dominant ALS " is better than for ALS. This article is one of several that resulted from the PLS Symposium that was held last year in San Diego. Mark " I found #4 to be fascinating... Colleen > > > > > > I think the questions on numbness are to help distinguish PLS from MS. > > > PLS being a MOTOR neurone disease should not have any sensory > > > involvement such as numbness, whereas often in MS people initially only > > > notice numbness or pins and needles etc.. I have seen people on here > > > mention numbness etc but given what physically happens to the motor > > > neurones in PLS I don't believe any numbness is due directly to it but > > > to another issue. > > > > > > > > > > > > > > > > >------------------------------------------------------------------------ > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.1.394 / Virus Database: 268.9.5/377 - Release Date: 6/27/2006 > > > > > Quote
Guest guest Posted June 28, 2006 Report Posted June 28, 2006 Flora, You aren't sticking your nose in--that's what the groups are good for-- everyone sharing their experiences and tell others sometimes that this isn't the way it's supposed to be--sometimes we just have to fight for better care--again that is not right, but sometimes it's the way it is! You are a true asset to this group! Sue Me > Several people have talked about numbness and their doctors not answering > their concerns. That to me is wrong, just don't understand that. Just sticking my nose in where it dosen't > belong........................Flora Quote
Guest guest Posted June 28, 2006 Report Posted June 28, 2006 Went to MDA clinic today, they agreed with me PLS is a catch all disease when they can't find the dx of our problem Re: plsers/numbness > To: PLS-FRIENDS > > > , > > > > What you say is absolutely true about distinguishing MS from > PLS. > > EXCEPT there can be varients of PLS. I do happen to have proven > mild > > sensory involvement and my doc has always said it is a varient > > form of > > PLS. Still, it always left a question mark in my mind because i > > 'knew' sensory should have NO place in a PLS diagnosis. Then I > read > > the partial abstract from Mark Weber posted here that his > doctor, > > Gordon, wrote up describing some of the variations of PLS - the > 4th > > one includes sensory involvement. Now i have even more > confidence in > > my doctor for recognizing this. > > > > Colleen > > > > > > > > > > I think the questions on numbness are to help distinguish PLS > > from MS. > > > PLS being a MOTOR neurone disease should not have any sensory > > > involvement such as numbness, whereas often in MS people > > initially only > > > notice numbness or pins and needles etc.. I have seen people > on > > here > > > mention numbness etc but given what physically happens to the > > motor > > > neurones in PLS I don't believe any numbness is due directly > to > > it but > > > to another issue. > > > > > > > > > > > > > > > > > > > > > > Quote
Guest guest Posted June 29, 2006 Report Posted June 29, 2006 some doctors and researchers disagree with that line of thinking email from Tawny H. Swain Castle, MA Re: plsers/numbness > To: PLS-FRIENDS@ yahoogroups. com > > > , > > > > What you say is absolutely true about distinguishing MS from > PLS. > > EXCEPT there can be varients of PLS. I do happen to have proven > mild > > sensory involvement and my doc has always said it is a varient > > form of > > PLS. Still, it always left a question mark in my mind because i > > 'knew' sensory should have NO place in a PLS diagnosis. Then I > read > > the partial abstract from Mark Weber posted here that his > doctor, > > Gordon, wrote up describing some of the variations of PLS - the > 4th > > one includes sensory involvement. Now i have even more > confidence in > > my doctor for recognizing this. > > > > Colleen > > > > > > > > > > I think the questions on numbness are to help distinguish PLS > > from MS. > > > PLS being a MOTOR neurone disease should not have any sensory > > > involvement such as numbness, whereas often in MS people > > initially only > > > notice numbness or pins and needles etc.. I have seen people > on > > here > > > mention numbness etc but given what physically happens to the > > motor > > > neurones in PLS I don't believe any numbness is due directly > to > > it but > > > to another issue. > > > > > > > > > > > > > > > > > > > > > > Quote
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