Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 I went to the ALS/MND clinic last week and I think I could perhaps have a neuro there who is a quack or a genius, but I doubt the latter. Last time I saw him he told me that he thought I was more HSP than PLS and that My MRI showed thinning of the spinal cord which is indicative of HSP. Now on my second visit, he tells me I am more PLS than HSP which is strange as I havent changed at all since my last visit in November and was very surprised when I reminded him what he said about HSP and my MRI etc. I am only sticking with him for the time being as he has arranged for the genetics neuro to do HSP blood tests that will be paid for by the hospital and free physiotherapy for my sore neck and shoulders. He wanted me to have a TMS done last year but I refused because I think it was Mark Webber who wrote he had one done and passed out. This neuro told me that a TMS could distinguish between PLS and HSP. Has anyone heard of this or is this just rubbish. Anyway I am going along with it as he assures me that I wont pass out and wont feel a thing. I have one last bastion of hope for a dx of either HSP or PLS and that is to see the prominent leading ALS/MND specialist in my state of NEW SOUTH WALES. I could have seen him a long time ago but his fees are $300 with not much return from medicare. I am waiting instead for the bulk billing medicare neurologists to hopefully dx me. aussie maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Maureen, In my most recent TMS exam, I did pass out--but only for an instant. But I didn't know that I had passed out. The only reason that I now know is because they told me. You do have a vague sense of coming to--like you would if you were seriously daydreaming and someone said something to bring you back to reality--in an instant. There is no sense of having ever lost consciousness. I should point out that I have had 2 TMS tests. The first time there was no passing out. The magnetic field was targeted to specific regions of my brain to stimulate nerve cells that control various parts of the body to get those parts of the body to move. Weird--but painless. (Note that the passing out TMS is much less weird--but also painless.) Ask your neuro what the test is like. Either way it'll be painless and worth a good story to tell your friends. Mark --- Maureen mazzie20022000@...> wrote: > I went to the ALS/MND clinic last week and I think I > could perhaps > have a neuro there who is a quack or a genius, but I > doubt the latter. > Last time I saw him he told me that he thought I > was more HSP than > PLS and that My MRI showed thinning of the spinal > cord which is > indicative of HSP. Now on my second visit, he tells > me I am more PLS > than HSP which is strange as I havent changed at all > since my last > visit in November and was very surprised when I > reminded him what he > said about HSP and my MRI etc. I am only sticking > with him for the > time being as he has arranged for the genetics neuro > to do HSP blood > tests that will be paid for by the hospital and free > physiotherapy for > my sore neck and shoulders. He wanted me to have a > TMS done last year > but I refused because I think it was Mark Webber who > wrote he had one > done and passed out. This neuro told me that a TMS > could distinguish > between PLS and HSP. Has anyone heard of this or is > this just > rubbish. Anyway I am going along with it as he > assures me that I wont > pass out and wont feel a thing. > > I have one last bastion of hope for a dx of either > HSP or PLS and that > is to see the prominent leading ALS/MND specialist > in my state of NEW > SOUTH WALES. I could have seen him a long time ago > but his fees are > $300 with not much return from medicare. I am > waiting instead for the > bulk billing medicare neurologists to hopefully dx > me. > > aussie maureen > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Mark, I went into depth with the neuro about the TMS test and so thats why I am having it but have you ever heard that it could possibly distinguish between PLS and HSP? Aussie Maureen > > > I went to the ALS/MND clinic last week and I think I > > could perhaps > > have a neuro there who is a quack or a genius, but I > > doubt the latter. > > Last time I saw him he told me that he thought I > > was more HSP than > > PLS and that My MRI showed thinning of the spinal > > cord which is > > indicative of HSP. Now on my second visit, he tells > > me I am more PLS > > than HSP which is strange as I havent changed at all > > since my last > > visit in November and was very surprised when I > > reminded him what he > > said about HSP and my MRI etc. I am only sticking > > with him for the > > time being as he has arranged for the genetics neuro > > to do HSP blood > > tests that will be paid for by the hospital and free > > physiotherapy for > > my sore neck and shoulders. He wanted me to have a > > TMS done last year > > but I refused because I think it was Mark Webber who > > wrote he had one > > done and passed out. This neuro told me that a TMS > > could distinguish > > between PLS and HSP. Has anyone heard of this or is > > this just > > rubbish. Anyway I am going along with it as he > > assures me that I wont > > pass out and wont feel a thing. > > > > I have one last bastion of hope for a dx of either > > HSP or PLS and that > > is to see the prominent leading ALS/MND specialist > > in my state of NEW > > SOUTH WALES. I could have seen him a long time ago > > but his fees are > > $300 with not much return from medicare. I am > > waiting instead for the > > bulk billing medicare neurologists to hopefully dx > > me. > > > > aussie maureen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 What is a TMS test? marfla Be Blessed Re: TMS and ATTENTION MARK WEBBER > Hi Mark, I went into depth with the neuro about the TMS test and so > thats why I am having it but have you ever heard that it could > possibly distinguish between PLS and HSP? > > Aussie Maureen > > >> >> > I went to the ALS/MND clinic last week and I think I >> > could perhaps >> > have a neuro there who is a quack or a genius, but I >> > doubt the latter. >> > Last time I saw him he told me that he thought I >> > was more HSP than >> > PLS and that My MRI showed thinning of the spinal >> > cord which is >> > indicative of HSP. Now on my second visit, he tells >> > me I am more PLS >> > than HSP which is strange as I havent changed at all >> > since my last >> > visit in November and was very surprised when I >> > reminded him what he >> > said about HSP and my MRI etc. I am only sticking >> > with him for the >> > time being as he has arranged for the genetics neuro >> > to do HSP blood >> > tests that will be paid for by the hospital and free >> > physiotherapy for >> > my sore neck and shoulders. He wanted me to have a >> > TMS done last year >> > but I refused because I think it was Mark Webber who >> > wrote he had one >> > done and passed out. This neuro told me that a TMS >> > could distinguish >> > between PLS and HSP. Has anyone heard of this or is >> > this just >> > rubbish. Anyway I am going along with it as he >> > assures me that I wont >> > pass out and wont feel a thing. >> > >> > I have one last bastion of hope for a dx of either >> > HSP or PLS and that >> > is to see the prominent leading ALS/MND specialist >> > in my state of NEW >> > SOUTH WALES. I could have seen him a long time ago >> > but his fees are >> > $300 with not much return from medicare. I am >> > waiting instead for the >> > bulk billing medicare neurologists to hopefully dx >> > me. >> > >> > aussie maureen >> > >> > >> > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 > >> > >> > I went to the ALS/MND clinic last week and I think I > >> > could perhaps > >> > have a neuro there who is a quack or a genius, but I > >> > doubt the latter. > >> > Last time I saw him he told me that he thought I > >> > was more HSP than > >> > PLS and that My MRI showed thinning of the spinal > >> > cord which is > >> > indicative of HSP. Now on my second visit, he tells > >> > me I am more PLS > >> > than HSP which is strange as I havent changed at all > >> > since my last > >> > visit in November and was very surprised when I > >> > reminded him what he > >> > said about HSP and my MRI etc. I am only sticking > >> > with him for the > >> > time being as he has arranged for the genetics neuro > >> > to do HSP blood > >> > tests that will be paid for by the hospital and free > >> > physiotherapy for > >> > my sore neck and shoulders. He wanted me to have a > >> > TMS done last year > >> > but I refused because I think it was Mark Webber who > >> > wrote he had one > >> > done and passed out. This neuro told me that a TMS > >> > could distinguish > >> > between PLS and HSP. Has anyone heard of this or is > >> > this just > >> > rubbish. Anyway I am going along with it as he > >> > assures me that I wont > >> > pass out and wont feel a thing. > >> > > >> > I have one last bastion of hope for a dx of either > >> > HSP or PLS and that > >> > is to see the prominent leading ALS/MND specialist > >> > in my state of NEW > >> > SOUTH WALES. I could have seen him a long time ago > >> > but his fees are > >> > $300 with not much return from medicare. I am > >> > waiting instead for the > >> > bulk billing medicare neurologists to hopefully dx > >> > me. > >> > > >> > aussie maureen > >> > > >> > > >> > > >> > > >> > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 There was a paper done by Dr. Kay Floeter of the US National Institutes of Health that had data regarding TMS results in PLS patients. The data showed that PLS patients had abnormal TMS test results. But I don't understand TMS test result data. So I don't know if the paper said that TMS can distinguish between PLS and HSP. Nor do I know if other papers have said that. Further, there are papers that provide TMS test results on PLS patients, and other papers that present TMS test results on HSP patients. Your neuro may have read those papers, made the test result comparisons himself, and noticed differences in the data between PLS and HSP patients. My advice: if your neuro said it, it is almost definitely (OK--definitely) true. Mark --- Maureen mazzie20022000@...> wrote: > Hi Mark, I went into depth with the neuro about the > TMS test and so > thats why I am having it but have you ever heard > that it could > possibly distinguish between PLS and HSP? > > Aussie Maureen > > > > > > > I went to the ALS/MND clinic last week and I > think I > > > could perhaps > > > have a neuro there who is a quack or a genius, > but I > > > doubt the latter. > > > Last time I saw him he told me that he thought > I > > > was more HSP than > > > PLS and that My MRI showed thinning of the > spinal > > > cord which is > > > indicative of HSP. Now on my second visit, he > tells > > > me I am more PLS > > > than HSP which is strange as I havent changed at > all > > > since my last > > > visit in November and was very surprised when I > > > reminded him what he > > > said about HSP and my MRI etc. I am only > sticking > > > with him for the > > > time being as he has arranged for the genetics > neuro > > > to do HSP blood > > > tests that will be paid for by the hospital and > free > > > physiotherapy for > > > my sore neck and shoulders. He wanted me to > have a > > > TMS done last year > > > but I refused because I think it was Mark Webber > who > > > wrote he had one > > > done and passed out. This neuro told me that a > TMS > > > could distinguish > > > between PLS and HSP. Has anyone heard of this > or is > > > this just > > > rubbish. Anyway I am going along with it as he > > > assures me that I wont > > > pass out and wont feel a thing. > > > > > > I have one last bastion of hope for a dx of > either > > > HSP or PLS and that > > > is to see the prominent leading ALS/MND > specialist > > > in my state of NEW > > > SOUTH WALES. I could have seen him a long time > ago > > > but his fees are > > > $300 with not much return from medicare. I am > > > waiting instead for the > > > bulk billing medicare neurologists to hopefully > dx > > > me. > > > > > > aussie maureen > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 thanks for the info marfla Be Blessed Re: TMS and ATTENTION MARK WEBBER > >> >> >> >> > I went to the ALS/MND clinic last week and I think I >> >> > could perhaps >> >> > have a neuro there who is a quack or a genius, but I >> >> > doubt the latter. >> >> > Last time I saw him he told me that he thought I >> >> > was more HSP than >> >> > PLS and that My MRI showed thinning of the spinal >> >> > cord which is >> >> > indicative of HSP. Now on my second visit, he tells >> >> > me I am more PLS >> >> > than HSP which is strange as I havent changed at all >> >> > since my last >> >> > visit in November and was very surprised when I >> >> > reminded him what he >> >> > said about HSP and my MRI etc. I am only sticking >> >> > with him for the >> >> > time being as he has arranged for the genetics neuro >> >> > to do HSP blood >> >> > tests that will be paid for by the hospital and free >> >> > physiotherapy for >> >> > my sore neck and shoulders. He wanted me to have a >> >> > TMS done last year >> >> > but I refused because I think it was Mark Webber who >> >> > wrote he had one >> >> > done and passed out. This neuro told me that a TMS >> >> > could distinguish >> >> > between PLS and HSP. Has anyone heard of this or is >> >> > this just >> >> > rubbish. Anyway I am going along with it as he >> >> > assures me that I wont >> >> > pass out and wont feel a thing. >> >> > >> >> > I have one last bastion of hope for a dx of either >> >> > HSP or PLS and that >> >> > is to see the prominent leading ALS/MND specialist >> >> > in my state of NEW >> >> > SOUTH WALES. I could have seen him a long time ago >> >> > but his fees are >> >> > $300 with not much return from medicare. I am >> >> > waiting instead for the >> >> > bulk billing medicare neurologists to hopefully dx >> >> > me. >> >> > >> >> > aussie maureen >> >> > >> >> > >> >> > >> >> > >> >> >> > >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 It's a test where a doctor uses an electromagnet to stimulate the brain. The first time I had it done, the doc wanted to get different parts of my body to move, and measure the time it took the signal to go from my brain to the relevant muscle. So..to get my leg to move, the doc focused the device on the section of the brain that controlled the leg, turned on the electro-magnet for an instant, and then my leg moved. The second time I had it done, my entire brain was affected. That's probably why everyone passes out. (The technician doing the test on me told me that everyone in the lab has had the tests done on them. They're painless and weird.) I don't understand much about these tests. Mark the magnet was focussed on different sections of the brain. If they wanted --- Marfla marfla04@...> wrote: > What is a TMS test? > > marfla > > Be Blessed > > Re: TMS and ATTENTION MARK > WEBBER > > > > Hi Mark, I went into depth with the neuro about > the TMS test and so > > thats why I am having it but have you ever heard > that it could > > possibly distinguish between PLS and HSP? > > > > Aussie Maureen > > > > > >> > >> > I went to the ALS/MND clinic last week and I > think I > >> > could perhaps > >> > have a neuro there who is a quack or a genius, > but I > >> > doubt the latter. > >> > Last time I saw him he told me that he thought > I > >> > was more HSP than > >> > PLS and that My MRI showed thinning of the > spinal > >> > cord which is > >> > indicative of HSP. Now on my second visit, he > tells > >> > me I am more PLS > >> > than HSP which is strange as I havent changed > at all > >> > since my last > >> > visit in November and was very surprised when I > >> > reminded him what he > >> > said about HSP and my MRI etc. I am only > sticking > >> > with him for the > >> > time being as he has arranged for the genetics > neuro > >> > to do HSP blood > >> > tests that will be paid for by the hospital and > free > >> > physiotherapy for > >> > my sore neck and shoulders. He wanted me to > have a > >> > TMS done last year > >> > but I refused because I think it was Mark > Webber who > >> > wrote he had one > >> > done and passed out. This neuro told me that a > TMS > >> > could distinguish > >> > between PLS and HSP. Has anyone heard of this > or is > >> > this just > >> > rubbish. Anyway I am going along with it as he > >> > assures me that I wont > >> > pass out and wont feel a thing. > >> > > >> > I have one last bastion of hope for a dx of > either > >> > HSP or PLS and that > >> > is to see the prominent leading ALS/MND > specialist > >> > in my state of NEW > >> > SOUTH WALES. I could have seen him a long time > ago > >> > but his fees are > >> > $300 with not much return from medicare. I am > >> > waiting instead for the > >> > bulk billing medicare neurologists to hopefully > dx > >> > me. > >> > > >> > aussie maureen > >> > > >> > > >> > > >> > > >> > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Thanks for that Mark. Maybe he is not a quack after all. Aussie Maureen > > > > > > > I went to the ALS/MND clinic last week and I > > think I > > > > could perhaps > > > > have a neuro there who is a quack or a genius, > > but I > > > > doubt the latter. > > > > Last time I saw him he told me that he thought > > I > > > > was more HSP than > > > > PLS and that My MRI showed thinning of the > > spinal > > > > cord which is > > > > indicative of HSP. Now on my second visit, he > > tells > > > > me I am more PLS > > > > than HSP which is strange as I havent changed at > > all > > > > since my last > > > > visit in November and was very surprised when I > > > > reminded him what he > > > > said about HSP and my MRI etc. I am only > > sticking > > > > with him for the > > > > time being as he has arranged for the genetics > > neuro > > > > to do HSP blood > > > > tests that will be paid for by the hospital and > > free > > > > physiotherapy for > > > > my sore neck and shoulders. He wanted me to > > have a > > > > TMS done last year > > > > but I refused because I think it was Mark Webber > > who > > > > wrote he had one > > > > done and passed out. This neuro told me that a > > TMS > > > > could distinguish > > > > between PLS and HSP. Has anyone heard of this > > or is > > > > this just > > > > rubbish. Anyway I am going along with it as he > > > > assures me that I wont > > > > pass out and wont feel a thing. > > > > > > > > I have one last bastion of hope for a dx of > > either > > > > HSP or PLS and that > > > > is to see the prominent leading ALS/MND > > specialist > > > > in my state of NEW > > > > SOUTH WALES. I could have seen him a long time > > ago > > > > but his fees are > > > > $300 with not much return from medicare. I am > > > > waiting instead for the > > > > bulk billing medicare neurologists to hopefully > > dx > > > > me. > > > > > > > > aussie maureen > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 ummm. sounds little scary to me. almost frankensteinish Be Blessed Re: TMS and ATTENTION MARK >> WEBBER >> >> >> > Hi Mark, I went into depth with the neuro about >> the TMS test and so >> > thats why I am having it but have you ever heard >> that it could >> > possibly distinguish between PLS and HSP? >> > >> > Aussie Maureen >> > >> > >> >> >> >> > I went to the ALS/MND clinic last week and I >> think I >> >> > could perhaps >> >> > have a neuro there who is a quack or a genius, >> but I >> >> > doubt the latter. >> >> > Last time I saw him he told me that he thought >> I >> >> > was more HSP than >> >> > PLS and that My MRI showed thinning of the >> spinal >> >> > cord which is >> >> > indicative of HSP. Now on my second visit, he >> tells >> >> > me I am more PLS >> >> > than HSP which is strange as I havent changed >> at all >> >> > since my last >> >> > visit in November and was very surprised when I >> >> > reminded him what he >> >> > said about HSP and my MRI etc. I am only >> sticking >> >> > with him for the >> >> > time being as he has arranged for the genetics >> neuro >> >> > to do HSP blood >> >> > tests that will be paid for by the hospital and >> free >> >> > physiotherapy for >> >> > my sore neck and shoulders. He wanted me to >> have a >> >> > TMS done last year >> >> > but I refused because I think it was Mark >> Webber who >> >> > wrote he had one >> >> > done and passed out. This neuro told me that a >> TMS >> >> > could distinguish >> >> > between PLS and HSP. Has anyone heard of this >> or is >> >> > this just >> >> > rubbish. Anyway I am going along with it as he >> >> > assures me that I wont >> >> > pass out and wont feel a thing. >> >> > >> >> > I have one last bastion of hope for a dx of >> either >> >> > HSP or PLS and that >> >> > is to see the prominent leading ALS/MND >> specialist >> >> > in my state of NEW >> >> > SOUTH WALES. I could have seen him a long time >> ago >> >> > but his fees are >> >> > $300 with not much return from medicare. I am >> >> > waiting instead for the >> >> > bulk billing medicare neurologists to hopefully >> dx >> >> > me. >> >> > >> >> > aussie maureen >> >> > >> >> > >> >> > >> >> > >> >> >> > >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 its no different to any of the other electrical neurological tests that they do. I think that the test where they place the glob all over your hair and then stick the electrodes on is very ensteinish! If you're a female you end up looking like Mrs enstein because your hair is all messed up afterwards and the only way to fix it is to wash the globby stuff out. Aussie Maureen > >> >> > >> >> > I went to the ALS/MND clinic last week and I > >> think I > >> >> > could perhaps > >> >> > have a neuro there who is a quack or a genius, > >> but I > >> >> > doubt the latter. > >> >> > Last time I saw him he told me that he thought > >> I > >> >> > was more HSP than > >> >> > PLS and that My MRI showed thinning of the > >> spinal > >> >> > cord which is > >> >> > indicative of HSP. Now on my second visit, he > >> tells > >> >> > me I am more PLS > >> >> > than HSP which is strange as I havent changed > >> at all > >> >> > since my last > >> >> > visit in November and was very surprised when I > >> >> > reminded him what he > >> >> > said about HSP and my MRI etc. I am only > >> sticking > >> >> > with him for the > >> >> > time being as he has arranged for the genetics > >> neuro > >> >> > to do HSP blood > >> >> > tests that will be paid for by the hospital and > >> free > >> >> > physiotherapy for > >> >> > my sore neck and shoulders. He wanted me to > >> have a > >> >> > TMS done last year > >> >> > but I refused because I think it was Mark > >> Webber who > >> >> > wrote he had one > >> >> > done and passed out. This neuro told me that a > >> TMS > >> >> > could distinguish > >> >> > between PLS and HSP. Has anyone heard of this > >> or is > >> >> > this just > >> >> > rubbish. Anyway I am going along with it as he > >> >> > assures me that I wont > >> >> > pass out and wont feel a thing. > >> >> > > >> >> > I have one last bastion of hope for a dx of > >> either > >> >> > HSP or PLS and that > >> >> > is to see the prominent leading ALS/MND > >> specialist > >> >> > in my state of NEW > >> >> > SOUTH WALES. I could have seen him a long time > >> ago > >> >> > but his fees are > >> >> > $300 with not much return from medicare. I am > >> >> > waiting instead for the > >> >> > bulk billing medicare neurologists to hopefully > >> dx > >> >> > me. > >> >> > > >> >> > aussie maureen > >> >> > > >> >> > > >> >> > > >> >> > > >> >> > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 OH yeah and try getting all that goo out of waist length thick hair GRRRRRRRRRRRRRRRRRRRRRRR days later i can still find some of the goo in my hair and think its dandruff YUCKY Be Blessed Re: TMS and ATTENTION MARK WEBBER > its no different to any of the other electrical neurological tests > that they do. I think that the test where they place the glob all > over your hair and then stick the electrodes on is very > ensteinish! If you're a female you end up looking like Mrs > enstein because your hair is all messed up afterwards and the > only way to fix it is to wash the globby stuff out. > > Aussie Maureen > > >> >> >> >> >> >> > I went to the ALS/MND clinic last week and I >> >> think I >> >> >> > could perhaps >> >> >> > have a neuro there who is a quack or a genius, >> >> but I >> >> >> > doubt the latter. >> >> >> > Last time I saw him he told me that he thought >> >> I >> >> >> > was more HSP than >> >> >> > PLS and that My MRI showed thinning of the >> >> spinal >> >> >> > cord which is >> >> >> > indicative of HSP. Now on my second visit, he >> >> tells >> >> >> > me I am more PLS >> >> >> > than HSP which is strange as I havent changed >> >> at all >> >> >> > since my last >> >> >> > visit in November and was very surprised when I >> >> >> > reminded him what he >> >> >> > said about HSP and my MRI etc. I am only >> >> sticking >> >> >> > with him for the >> >> >> > time being as he has arranged for the genetics >> >> neuro >> >> >> > to do HSP blood >> >> >> > tests that will be paid for by the hospital and >> >> free >> >> >> > physiotherapy for >> >> >> > my sore neck and shoulders. He wanted me to >> >> have a >> >> >> > TMS done last year >> >> >> > but I refused because I think it was Mark >> >> Webber who >> >> >> > wrote he had one >> >> >> > done and passed out. This neuro told me that a >> >> TMS >> >> >> > could distinguish >> >> >> > between PLS and HSP. Has anyone heard of this >> >> or is >> >> >> > this just >> >> >> > rubbish. Anyway I am going along with it as he >> >> >> > assures me that I wont >> >> >> > pass out and wont feel a thing. >> >> >> > >> >> >> > I have one last bastion of hope for a dx of >> >> either >> >> >> > HSP or PLS and that >> >> >> > is to see the prominent leading ALS/MND >> >> specialist >> >> >> > in my state of NEW >> >> >> > SOUTH WALES. I could have seen him a long time >> >> ago >> >> >> > but his fees are >> >> >> > $300 with not much return from medicare. I am >> >> >> > waiting instead for the >> >> >> > bulk billing medicare neurologists to hopefully >> >> dx >> >> >> > me. >> >> >> > >> >> >> > aussie maureen >> >> >> > >> >> >> > >> >> >> > >> >> >> > >> >> >> >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 sounds very fascinating and much less painless than some of the spinal taps i have had!! think it is great that your doc wants to do it maureen! i wouldn't mind watching myself have one----both as a patient and a psychologist! wow, i had never heard of this before ya'll had this discussion---so glad you did cause i now i want to have more knowledge about it. let us know how it goes!! tawny Maureen mazzie20022000@...> wrote: > >> > >> > I went to the ALS/MND clinic last week and I think I > >> > could perhaps > >> > have a neuro there who is a quack or a genius, but I > >> > doubt the latter. > >> > Last time I saw him he told me that he thought I > >> > was more HSP than > >> > PLS and that My MRI showed thinning of the spinal > >> > cord which is > >> > indicative of HSP. Now on my second visit, he tells > >> > me I am more PLS > >> > than HSP which is strange as I havent changed at all > >> > since my last > >> > visit in November and was very surprised when I > >> > reminded him what he > >> > said about HSP and my MRI etc. I am only sticking > >> > with him for the > >> > time being as he has arranged for the genetics neuro > >> > to do HSP blood > >> > tests that will be paid for by the hospital and free > >> > physiotherapy for > >> > my sore neck and shoulders. He wanted me to have a > >> > TMS done last year > >> > but I refused because I think it was Mark Webber who > >> > wrote he had one > >> > done and passed out. This neuro told me that a TMS > >> > could distinguish > >> > between PLS and HSP. Has anyone heard of this or is > >> > this just > >> > rubbish. Anyway I am going along with it as he > >> > assures me that I wont > >> > pass out and wont feel a thing. > >> > > >> > I have one last bastion of hope for a dx of either > >> > HSP or PLS and that > >> > is to see the prominent leading ALS/MND specialist > >> > in my state of NEW > >> > SOUTH WALES. I could have seen him a long time ago > >> > but his fees are > >> > $300 with not much return from medicare. I am > >> > waiting instead for the > >> > bulk billing medicare neurologists to hopefully dx > >> > me. > >> > > >> > aussie maureen > >> > > >> > > >> > > >> > > >> > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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