Re: [TMIC] CBS
Helloo Craniosacral therapy relieved pain and a hugely distended abdomen (which I hid for 8 months.) The fascia under our skin is like a net holding everything in. It gets "kinked" Myofascial release (having to do with relaxing the fascia as it interfaces with the muscle and craniosacral - having to do with the cranium, dura, spinal cord and dural sack.)The therapist finds the beginning and ending of these "kinks" or restrictions and releases the tightness. This takes pressure off the fascial system, decreasing the symptoms. I recently had a brace made for my left leg which has increased my balance tremendously. It is for "drop foot" and picks my foot up automatically. Also, have orthodics for high arch. Susan - Phoenix On Oct 31, 2011, at 12:24 PM, pjv1...@chartermi.net wrote: HI Susan, Thank you for the information. I smiled when I read your diagnosis of Brown Sequard Syndrome, because it reminded me of the first time it was used by a neuro in my presence. I was seeing the neuro who diagnosed me in the hospotal with TM but his office was 70 miles away. I asked my PCP for a referral to a neuro closer to home. The new neuro spoke into his recorder during my visit and said, "Patient has Brown Sequard Syndrome. I was stressed and said "No, I'm here for Transverse Myelitis". He was annoyed with me for interrupting him. I asked the office manager to find out what the new term was and looked it up when I got home. Duh! They could have saved me a lot of worry if it had been explained it wasn't yet another ugly illness and just the symptoms my body portrayed. TM has been a learning experience regarding all the medical terminology. Now I need to look up cranial sacral therapy. How has it helped you? Patti - Michigan On Mon, Oct 31, 2011 at 12:02 PM, Susan Kleinz wrote: As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix, AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries – and particularly TM – to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml http://cufsf.org/ http://restorative-therapies.com/codyunser http://www.longislandpress.com/2009/08/08/cody-unser-new- documentary-candid-take-on-paralysis/ http://www.hopkinsmedicine.org/news/media/releases/ film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transver se_myelitis_premieres_june_2 Betty (in Northern California ) ___ From: kimharrison...@comcast.net[ mailto:kimharrison...@comcast.net] Sent: Friday, October 28, 2011 2:48 PM To: tmic-list@eskimo.com Cc: transverse myelitis Subject: Re: [TMIC] CBS Yes, here is the CBS link if anyone needs it http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could- raise-hope-for-the-paralyzed/ ___ From: "James Berg" < molokai...@gmail.com> To: "transverse myelitis" < tmic-list@eskimo.com> Sent: Friday, October 28, 2011 5:39:19 PM Subject: [TMIC] CBS Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
Re: [TMIC] CBS
High top sneakers do the trick too. Rosalie In a message dated 10/31/2011 8:46:08 P.M. Eastern Daylight Time, jcs...@yahoo.com writes: and another benefit Dalton is that you can feel cool wearing them again,,(i like your trade mark sign for TM) ’¿¨ From: Dalton Garis To: Elizabeth Clark ; 'Susan Kleinz' Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 7:13 PM Subject: Re: [TMIC] CBS Hey friends; I am a big proponent of our checking out if wearing western or cowboy boots can handle drop foot. I have drop foot on the left foot. The decision was either to get a brace attached to a shoe that resembled a large slab of cement painted black, or, get cowboy boots. Well, which would you rather have? Boots, that you can change to match conditions and tastes, or a slab of black concrete that becomes your only choice of footwear? Mine are hand-made M.L. Leddy's of Fort Worth, Texas. I had a pair almost forty years ago; so when I got drop foot from ™ I thought this would be a nice solution to the problem. Now, I don't wear anything else. And they completely solve the problem. I recommend getting a good pair, the best you can afford. Well worth the money in comfort and convenience. Dalton From: Elizabeth Clark <_xbeeclarkx@gmail.com_ (mailto:xbeecla...@gmail.com) > Date: Mon, 31 Oct 2011 12:37:46 -0700 To: 'Susan Kleinz' <_skleinz@cox.net_ (mailto:skle...@cox.net) > Cc: <_tmic-list@eskimo.com_ (mailto:tmic-list@eskimo.com) > Subject: RE: [TMIC] CBS Resent-From: <_tmic-list@eskimo.com_ (mailto:tmic-list@eskimo.com) > Resent-Date: Mon, 31 Oct 2011 12:40:15 -0700 Hi Susan, Sorry we have to meet under these circumstances – I am 58, married with 2 children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. Early this year I started wearing a leg brace (when I’m out walking a lot – grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my ‘condition’ and other problems I have as a result of TM – weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don’t wear it around the house, but when I go out, it helps tremendously. I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I’m curious… you said you have probable MS, but were dx’d with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? And the Cranial Sacral Therapy… I’m very interested in it. I had many years of chiropractic treatments during my teens & 20’s due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I’ve considered going back, but the thought of someone else touching and manipulating my body just creeps me out… I have extreme sensitivity to synthetic fabrics which make my skin feel like it’s crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn ’t see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way – other than the obvious feeling of well-being – did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? Sorry if I sound nosy, but I’m always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. Betty (in Northern California ) From: Susan Kleinz [_mailto:skleinz@cox.net_ (mailto:skle...@cox.net) ] Sent: Monday, October 31, 2011 9:02 AM To: Elizabeth Clark Cc: _kimharrison325@comcast.net_ (mailto:kimharrison...@comcast.net) ; _tmic-list@eskimo.com_ (mailto:tmic-list@eskimo.com) Subject: Re: [TMIC] CBS As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingle
Re: [TMIC] CBS
John, you are sure right about no answers for fixing nerve damage (other than, hopefully you'll get used to it). - Roger - Original Message - From: "john snodgrass" To: "Jeron Rampersad" , "r c pratt" Cc: tmic-list@eskimo.com, xbeecla...@gmail.com, skle...@cox.net Sent: Monday, October 31, 2011 5:49:11 PM Subject: Re: [TMIC] CBS i know what you mean J. i went to a neurologist once and sat there for over 2 hours and was before him less than 1 minute literally. 250.00 for that visit too! ya got good ones and then ya have the others. and according to reports Roger, they really have no good answers for fixing nerve damage. From: Jeron Rampersad To: r.c.pr...@frontier.com; jcs...@yahoo.com Cc: tmic-list@eskimo.com; xbeecla...@gmail.com; skle...@cox.net Sent: Monday, October 31, 2011 7:01 PM Subject: RE: [TMIC] CBS funny thing is, the doctors who have a clue just doesn't care. sometimes I wonder if they are in the medical field to help patients or just to call themselves "doctors". That sounds badbut which of us hasn't been through crap with our doctors? Jeron Date: Mon, 31 Oct 2011 22:51:40 + From: r.c.pr...@frontier.com To: jcs...@yahoo.com CC: tmic-list@eskimo.com; xbeecla...@gmail.com; skle...@cox.net Subject: Re: [TMIC] CBS Sometimes I think that doctors don't have a clue! - Roger in Kennewick, WA - Original Message - From: "john snodgrass" To: "Elizabeth Clark" , "Susan Kleinz" Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 2:33:40 PM Subject: Re: [TMIC] CBS I dont mean to sound pouty, perhaps I am the only one but i doubt it. the wherewithal for therapy of different sorts i have not. but if they come up with something that makes enough difference that would put me back to work,,I would surely start a "me" foundation and find the means for it. jeepers if I could find a way to stop the buzzing from the middle of my spine down to my feet I would gladly find the means. so you folks that have the means,,,by all means keep tryng,searching,looking, we all need answers. From: Elizabeth Clark To: 'Susan Kleinz' Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 3:37 PM Subject: RE: [TMIC] CBS Hi Susan, Sorry we have to meet under these circumstances – I am 58, married with 2 children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. Early this year I started wearing a leg brace (when I’m out walking a lot – grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my ‘condition’ and other problems I have as a result of TM – weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don’t wear it around the house, but when I go out, it helps tremendously. I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I’m curious… you said you have probable MS, but were dx’d with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? And the Cranial Sacral Therapy… I’m very interested in it. I had many years of chiropractic treatments during my teens & 20’s due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I’ve considered going back, but the thought of someone else touching and manipulating my body just creeps me out… I have extreme sensitivity to synthetic fabrics which make my skin feel like it’s crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way – other than the obvious feeling of well-being – did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? Sorry if I sound nosy, but I’m always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. Betty (in Northern California ) From: Susan Kleinz [mailto:skle...@cox.net] Sent: Monday, October 31, 2011 9:02 AM To: Elizabeth Clark Cc: kimharrison...@comcast.net; tmic-list@eskimo.com Subject: Re: [TMIC] CBS As "newbe"
Re: [TMIC] CBS
and another benefit Dalton is that you can feel cool wearing them again,,(i like your trade mark sign for TM) ’¿¨ From: Dalton Garis To: Elizabeth Clark ; 'Susan Kleinz' Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 7:13 PM Subject: Re: [TMIC] CBS Hey friends; I am a big proponent of our checking out if wearing western or cowboy boots can handle drop foot. I have drop foot on the left foot. The decision was either to get a brace attached to a shoe that resembled a large slab of cement painted black, or, get cowboy boots. Well, which would you rather have? Boots, that you can change to match conditions and tastes, or a slab of black concrete that becomes your only choice of footwear? Mine are hand-made M.L. Leddy's of Fort Worth, Texas. I had a pair almost forty years ago; so when I got drop foot from ™ I thought this would be a nice solution to the problem. Now, I don't wear anything else. And they completely solve the problem. I recommend getting a good pair, the best you can afford. Well worth the money in comfort and convenience. Dalton From: Elizabeth Clark Date: Mon, 31 Oct 2011 12:37:46 -0700 To: 'Susan Kleinz' Cc: Subject: RE: [TMIC] CBS Resent-From: Resent-Date: Mon, 31 Oct 2011 12:40:15 -0700 Hi Susan, > >Sorry we have to meet under these circumstances – I am 58, married with 2 children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. > >Early this year I started wearing a leg brace (when I’m out walking a lot – grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my ‘condition’ and other problems I have as a result of TM – weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don’t wear it around the house, but when I go out, it helps tremendously. > >I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I’m curious… you said you have probable MS, but were dx’d with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? > >And the Cranial Sacral Therapy… I’m very interested in it. I had many years of chiropractic treatments during my teens & 20’s due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I’ve considered going back, but the thought of someone else touching and manipulating my body just creeps me out… I have extreme sensitivity to synthetic fabrics which make my skin feel like it’s crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way – other than the obvious feeling of well-being – did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? > >Sorry if I sound nosy, but I’m always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. > >Betty >(in Northern California ) > > > > > >From:Susan Kleinz [mailto:skle...@cox.net] >Sent: Monday, October 31, 2011 9:02 AM >To: Elizabeth Clark >Cc: kimharrison...@comcast.net; tmic-list@eskimo.com >Subject: Re: [TMIC] CBS > >As "newbe" to this website, I'm Susan Kleinz > >57, married, 3 children, >diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. > >diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. > >thank you for all these wonderful websites! > >my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. >I've never had either. > >Tried 10 sessions of acupuncture... no clue if it helped. > >Many sessions of Cranial Sacral Therapy by RCST certified therapist - >phenomenal results - helped more than anything I have tried. > >B 12 shots twice a week help also. > >Susan >Phoenix , AZ > >On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: > > > >Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of
Re: [TMIC] CBS
Hey friends; I am a big proponent of our checking out if wearing western or cowboy boots can handle drop foot. I have drop foot on the left foot. The decision was either to get a brace attached to a shoe that resembled a large slab of cement painted black, or, get cowboy boots. Well, which would you rather have? Boots, that you can change to match conditions and tastes, or a slab of black concrete that becomes your only choice of footwear? Mine are hand-made M.L. Leddy's of Fort Worth, Texas. I had a pair almost forty years ago; so when I got drop foot from I thought this would be a nice solution to the problem. Now, I don't wear anything else. And they completely solve the problem. I recommend getting a good pair, the best you can afford. Well worth the money in comfort and convenience. Dalton From: Elizabeth Clark Date: Mon, 31 Oct 2011 12:37:46 -0700 To: 'Susan Kleinz' Cc: Subject: RE: [TMIC] CBS Resent-From: Resent-Date: Mon, 31 Oct 2011 12:40:15 -0700 > Hi Susan, > > Sorry we have to meet under these circumstances I am 58, married with 2 > children (20 & 22 who still live at home). I was dx¹d with TM in April of > 2006, spent a month in a re-hab facility, and ~two years in and out of > physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on > my right wrist/arm to improve my hand function. > > Early this year I started wearing a leg brace (when I¹m out walking a lot > grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated > issue, he became interested in my condition¹ and other problems I have as a > result of TM weak left leg (especially the knee), pronated arch/ankle and > drop-foot. He recommended a new, light-weight carbon-fibre brace (made by > Trulife in the U.K. > http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo > /matrix ) for my leg that has worked very well. It gives me the stability I > need without being too heavy. I don¹t wear it around the house, but when I go > out, it helps tremendously. > > I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM > so I¹m curious you said you have probable MS, but were dx¹d with TM this > year. Is that a correction to the initial BSS diagnosis of 20 years ago or in > addition to it? > > And the Cranial Sacral Therapy I¹m very interested in it. I had many years of > chiropractic treatments during my teens & 20¹s due to severe headaches and > backaches caused by my Scoliosis, but finally stopped going because I had my > spine fused (and partially because of the cost). Since then, I¹ve considered > going back, but the thought of someone else touching and manipulating my body > just creeps me out I have extreme sensitivity to synthetic fabrics which make > my skin feel like it¹s crawling and being hugged by others can sometimes be > painful. I tried acupuncture a couple years ago, but didn¹t see (or feel) any > improvement in my condition. You mention Cranial Sacral Therapy helped you > more than anything else. In what way other than the obvious feeling of > well-being did it help you? With pain or with function? Also, do you use > pain meds? If so, what do you use and in what dosage? > > Sorry if I sound nosy, but I¹m always interested in alternative therapies. > Since we all seem to react differently, you never know what might work for > you. > > Betty > (in Northern California) > > > > > From: Susan Kleinz [mailto:skle...@cox.net] > Sent: Monday, October 31, 2011 9:02 AM > To: Elizabeth Clark > Cc: kimharrison...@comcast.net; tmic-list@eskimo.com > Subject: Re: [TMIC] CBS > > As "newbe" to this website, I'm Susan Kleinz > > > > 57, married, 3 children, > > diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming > paralyzed on left side. > > > > diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace > on left leg. > > > > thank you for all these wonderful websites! > > > > my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or > shingles shots. > > I've never had either. > > > > Tried 10 sessions of acupuncture... no clue if it helped. > > > > Many sessions of Cranial Sacral Therapy by RCST certified therapist - > > phenomenal results - helped more than anything I have tried. > > > > B 12 shots twice a week help also. > > > > Susan > > Phoenix, AZ > > > > On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: > > > Wasn¹t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race > car driver, Al Unser, Jr.) and has
RE: [TMIC] CBS
funny thing is, the doctors who have a clue just doesn't care. sometimes I wonder if they are in the medical field to help patients or just to call themselves "doctors". That sounds badbut which of us hasn't been through crap with our doctors? Jeron Date: Mon, 31 Oct 2011 22:51:40 + From: r.c.pr...@frontier.com To: jcs...@yahoo.com CC: tmic-list@eskimo.com; xbeecla...@gmail.com; skle...@cox.net Subject: Re: [TMIC] CBS Sometimes I think that doctors don't have a clue! - Roger in Kennewick, WA - Original Message - From: "john snodgrass" To: "Elizabeth Clark" , "Susan Kleinz" Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 2:33:40 PM Subject: Re: [TMIC] CBS I dont mean to sound pouty, perhaps I am the only one but i doubt it. the wherewithal for therapy of different sorts i have not. but if they come up with something that makes enough difference that would put me back to work,,I would surely start a "me" foundation and find the means for it. jeepers if I could find a way to stop the buzzing from the middle of my spine down to my feet I would gladly find the means. so you folks that have the means,,,by all means keep tryng,searching,looking, we all need answers. From: Elizabeth Clark To: 'Susan Kleinz' Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 3:37 PM Subject: RE: [TMIC] CBS Hi Susan, Sorry we have to meet under these circumstances – I am 58, married with 2 children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. Early this year I started wearing a leg brace (when I’m out walking a lot – grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my ‘condition’ and other problems I have as a result of TM – weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don’t wear it around the house, but when I go out, it helps tremendously. I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I’m curious… you said you have probable MS, but were dx’d with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? And the Cranial Sacral Therapy… I’m very interested in it. I had many years of chiropractic treatments during my teens & 20’s due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I’ve considered going back, but the thought of someone else touching and manipulating my body just creeps me out… I have extreme sensitivity to synthetic fabrics which make my skin feel like it’s crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way – other than the obvious feeling of well-being – did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? Sorry if I sound nosy, but I’m always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. Betty (in Northern California ) From: Susan Kleinz [mailto:skle...@cox.net] Sent: Monday, October 31, 2011 9:02 AM To: Elizabeth Clark Cc: kimharrison...@comcast.net; tmic-list@eskimo.com Subject: Re: [TMIC] CBS As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix , AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight agai
Re: [TMIC] CBS
Sometimes I think that doctors don't have a clue! - Roger in Kennewick, WA - Original Message - From: "john snodgrass" To: "Elizabeth Clark" , "Susan Kleinz" Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 2:33:40 PM Subject: Re: [TMIC] CBS I dont mean to sound pouty, perhaps I am the only one but i doubt it. the wherewithal for therapy of different sorts i have not. but if they come up with something that makes enough difference that would put me back to work,,I would surely start a "me" foundation and find the means for it. jeepers if I could find a way to stop the buzzing from the middle of my spine down to my feet I would gladly find the means. so you folks that have the means,,,by all means keep tryng,searching,looking, we all need answers. From: Elizabeth Clark To: 'Susan Kleinz' Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 3:37 PM Subject: RE: [TMIC] CBS Hi Susan, Sorry we have to meet under these circumstances – I am 58, married with 2 children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. Early this year I started wearing a leg brace (when I’m out walking a lot – grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my ‘condition’ and other problems I have as a result of TM – weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don’t wear it around the house, but when I go out, it helps tremendously. I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I’m curious… you said you have probable MS, but were dx’d with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? And the Cranial Sacral Therapy… I’m very interested in it. I had many years of chiropractic treatments during my teens & 20’s due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I’ve considered going back, but the thought of someone else touching and manipulating my body just creeps me out… I have extreme sensitivity to synthetic fabrics which make my skin feel like it’s crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way – other than the obvious feeling of well-being – did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? Sorry if I sound nosy, but I’m always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. Betty (in Northern California ) From: Susan Kleinz [mailto:skle...@cox.net] Sent: Monday, October 31, 2011 9:02 AM To: Elizabeth Clark Cc: kimharrison...@comcast.net; tmic-list@eskimo.com Subject: Re: [TMIC] CBS As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix , AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries – and particularly TM – to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml http://cufsf.org/ http://restorative-therapies.com/codyunser http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid-take-on-paralysis/ http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_uns
Re: [TMIC] CBS
I dont mean to sound pouty, perhaps I am the only one but i doubt it. the wherewithal for therapy of different sorts i have not. but if they come up with something that makes enough difference that would put me back to work,,I would surely start a "me" foundation and find the means for it. jeepers if I could find a way to stop the buzzing from the middle of my spine down to my feet I would gladly find the means. so you folks that have the means,,,by all means keep tryng,searching,looking, we all need answers. From: Elizabeth Clark To: 'Susan Kleinz' Cc: tmic-list@eskimo.com Sent: Monday, October 31, 2011 3:37 PM Subject: RE: [TMIC] CBS Hi Susan, Sorry we have to meet under these circumstances – I am 58, married with 2 children (20 & 22 who still live at home). I was dx’d with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. Early this year I started wearing a leg brace (when I’m out walking a lot – grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my ‘condition’ and other problems I have as a result of TM – weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-afo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don’t wear it around the house, but when I go out, it helps tremendously. I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I’m curious… you said you have probable MS, but were dx’d with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? And the Cranial Sacral Therapy… I’m very interested in it. I had many years of chiropractic treatments during my teens & 20’s due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I’ve considered going back, but the thought of someone else touching and manipulating my body just creeps me out… I have extreme sensitivity to synthetic fabrics which make my skin feel like it’s crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn’t see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way – other than the obvious feeling of well-being – did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? Sorry if I sound nosy, but I’m always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. Betty (in Northern California ) From:Susan Kleinz [mailto:skle...@cox.net] Sent: Monday, October 31, 2011 9:02 AM To: Elizabeth Clark Cc: kimharrison...@comcast.net; tmic-list@eskimo.com Subject: Re: [TMIC] CBS As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix , AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries – and particularly TM – to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml http://cufsf.org/ http://restorative-therapies.com/codyunser http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid-take-on-paralysis/ http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2 Betty (in Northern California ) From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] Sent: Friday, October 28, 2011 2:48 PM To: tmic-list@eskimo.com Cc: transverse myelitis Subject: Re: [TMIC]
Re: [TMIC] CBS
Hi Susan. one piece of word,dont get discouraged when you see adversarial mail posted. when i first seen "this is my 15th year" i though bad thoughts. any one of us at any given time could heal spontaneously. i would say more than likely not but I am not a nerve. im that little feller that gets on your nerves ;) happy halloween. From: Susan Kleinz To: Elizabeth Clark Cc: kimharrison...@comcast.net; tmic-list@eskimo.com Sent: Monday, October 31, 2011 12:02 PM Subject: Re: [TMIC] CBS As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix, AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries – and particularly TM – to help educate others about our dreaded condition. Check out the following: > >http://www.deepthrottle.com/Essays/cody_unser.shtml > >http://cufsf.org/ > >http://restorative-therapies.com/codyunser > >http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid-take-on-paralysis/ > >http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2 > > >Betty >(in Northern California ) > > > > > >From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] >Sent: Friday, October 28, 2011 2:48 PM >To: tmic-list@eskimo.com >Cc: transverse myelitis >Subject: Re: [TMIC] CBS > >Yes, here is the CBS link if anyone needs it >http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could-raise-hope-for-the-paralyzed/ > > > >From: "James Berg" >To: "transverse myelitis" >Sent: Friday, October 28, 2011 5:39:19 PM >Subject: [TMIC] CBS > >Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
RE: [TMIC] CBS
Hi Susan, Sorry we have to meet under these circumstances - I am 58, married with 2 children (20 & 22 who still live at home). I was dx'd with TM in April of 2006, spent a month in a re-hab facility, and ~two years in and out of physical & occupational therapy. Then in 2008 & 2009, I had two surgeries on my right wrist/arm to improve my hand function. Early this year I started wearing a leg brace (when I'm out walking a lot - grocery or mall shopping, etc.). After seeing a podiatrist for an unrelated issue, he became interested in my 'condition' and other problems I have as a result of TM - weak left leg (especially the knee), pronated arch/ankle and drop-foot. He recommended a new, light-weight carbon-fibre brace (made by Trulife in the U.K. http://trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-fibre-a fo/matrix ) for my leg that has worked very well. It gives me the stability I need without being too heavy. I don't wear it around the house, but when I go out, it helps tremendously. I looked up Brown-Sequard Syndrome. The symptoms of it read very much like TM so I'm curious. you said you have probable MS, but were dx'd with TM this year. Is that a correction to the initial BSS diagnosis of 20 years ago or in addition to it? And the Cranial Sacral Therapy. I'm very interested in it. I had many years of chiropractic treatments during my teens & 20's due to severe headaches and backaches caused by my Scoliosis, but finally stopped going because I had my spine fused (and partially because of the cost). Since then, I've considered going back, but the thought of someone else touching and manipulating my body just creeps me out. I have extreme sensitivity to synthetic fabrics which make my skin feel like it's crawling and being hugged by others can sometimes be painful. I tried acupuncture a couple years ago, but didn't see (or feel) any improvement in my condition. You mention Cranial Sacral Therapy helped you more than anything else. In what way - other than the obvious feeling of well-being - did it help you? With pain or with function? Also, do you use pain meds? If so, what do you use and in what dosage? Sorry if I sound nosy, but I'm always interested in alternative therapies. Since we all seem to react differently, you never know what might work for you. Betty (in Northern California) _ From: Susan Kleinz [mailto:skle...@cox.net] Sent: Monday, October 31, 2011 9:02 AM To: Elizabeth Clark Cc: kimharrison...@comcast.net; tmic-list@eskimo.com Subject: Re: [TMIC] CBS As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix, AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn't that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries - and particularly TM - to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml http://cufsf.org/ http://restorative-therapies.com/codyunser http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid- take-on-paralysis/ http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_un sers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2 Betty (in Northern California) _ From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] Sent: Friday, October 28, 2011 2:48 PM To: tmic-list@eskimo.com Cc: transverse myelitis Subject: Re: [TMIC] CBS Yes, here is the CBS link if anyone needs it http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could-raise-hope -for-the-paralyzed/ _ From: "James Berg" To: "transverse myelitis" Sent: Friday, October 28, 2011 5:39:19 PM Subject: [TMIC] CBS Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
Re: [TMIC] CBS
HI Susan, Thank you for the information. I smiled when I read your diagnosis of Brown Sequard Syndrome, because it reminded me of the first time it was used by a neuro in my presence. I was seeing the neuro who diagnosed me in the hospotal with TM but his office was 70 miles away. I asked my PCP for a referral to a neuro closer to home. The new neuro spoke into his recorder during my visit and said, "Patient has Brown Sequard Syndrome. I was stressed and said "No, I'm here for Transverse Myelitis". He was annoyed with me for interrupting him. I asked the office manager to find out what the new term was and looked it up when I got home. Duh! They could have saved me a lot of worry if it had been explained it wasn't yet another ugly illness and just the symptoms my body portrayed. TM has been a learning experience regarding all the medical terminology. Now I need to look up cranial sacral therapy. How has it helped you? Patti - Michigan On Mon, Oct 31, 2011 at 12:02 PM, Susan Kleinz wrote: As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix, AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries – and particularly TM – to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml <http://www.deepthrottle.com/Essays/cody_unser.shtml> http://cufsf.org/ <http://cufsf.org/> http://restorative-therapies.com/codyunser <http://restorative-therapies.com/codyunser> http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid-take-on-paralysis/ <http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid-take-on-paralysis/> http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2 <http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2> Betty (in Northern California ) ___ From: kimharrison...@comcast.net [ mailto:kimharrison...@comcast.net ] Sent: Friday, October 28, 2011 2:48 PM To: tmic-list@eskimo.com Cc: transverse myelitis Subject: Re: [TMIC] CBS Yes, here is the CBS link if anyone needs it http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could-raise-hope-for-the-paralyzed/ <http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could-raise-hope-for-the-paralyzed/> ___ From: "James Berg" < molokai...@gmail.com > To: "transverse myelitis" < tmic-list@eskimo.com > Sent: Friday, October 28, 2011 5:39:19 PM Subject: [TMIC] CBS Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
Re: [TMIC] CBS
As "newbe" to this website, I'm Susan Kleinz 57, married, 3 children, diagnosed 20 years ago with Brown Sequard Syndrome, probable MS after becoming paralyzed on left side. diagnosed Feb. of this year with Transverse Myeliltis. - can walk with a brace on left leg. thank you for all these wonderful websites! my neurologist at Barrows Neurological Clinics in Phoenix AZ says - no flu or shingles shots. I've never had either. Tried 10 sessions of acupuncture... no clue if it helped. Many sessions of Cranial Sacral Therapy by RCST certified therapist - phenomenal results - helped more than anything I have tried. B 12 shots twice a week help also. Susan Phoenix, AZ On Oct 28, 2011, at 7:32 PM, Elizabeth Clark wrote: Wasn’t that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries – and particularly TM – to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml http://cufsf.org/ http://restorative-therapies.com/codyunser http://www.longislandpress.com/2009/08/08/cody-unser-new- documentary-candid-take-on-paralysis/ http://www.hopkinsmedicine.org/news/media/releases/ film_chronicle_of_cody_unsers_9_year_struggle_with_paralyzing_transver se_myelitis_premieres_june_2 Betty (in Northern California) From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] Sent: Friday, October 28, 2011 2:48 PM To: tmic-list@eskimo.com Cc: transverse myelitis Subject: Re: [TMIC] CBS Yes, here is the CBS link if anyone needs it http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could- raise-hope-for-the-paralyzed/ From: "James Berg" To: "transverse myelitis" Sent: Friday, October 28, 2011 5:39:19 PM Subject: [TMIC] CBS Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
RE: [TMIC] CBS
Wasn't that a GREAT news bite? Cody Unser is an amazing girl (daughter of race car driver, Al Unser, Jr.) and has several websites dedicated to the fight against spinal cord injuries - and particularly TM - to help educate others about our dreaded condition. Check out the following: http://www.deepthrottle.com/Essays/cody_unser.shtml http://cufsf.org/ http://restorative-therapies.com/codyunser http://www.longislandpress.com/2009/08/08/cody-unser-new-documentary-candid- take-on-paralysis/ http://www.hopkinsmedicine.org/news/media/releases/film_chronicle_of_cody_un sers_9_year_struggle_with_paralyzing_transverse_myelitis_premieres_june_2 Betty (in Northern California) _ From: kimharrison...@comcast.net [mailto:kimharrison...@comcast.net] Sent: Friday, October 28, 2011 2:48 PM To: tmic-list@eskimo.com Cc: transverse myelitis Subject: Re: [TMIC] CBS Yes, here is the CBS link if anyone needs it http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could-raise-hope -for-the-paralyzed/ _ From: "James Berg" To: "transverse myelitis" Sent: Friday, October 28, 2011 5:39:19 PM Subject: [TMIC] CBS Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
Re: [TMIC] CBS
Yes, here is the CBS link if anyone needs it http://www.cbsnews.com/8301-18563_162-20126766/scuba-diving-could-raise-hope-for-the-paralyzed/ - Original Message - From: "James Berg" To: "transverse myelitis" Sent: Friday, October 28, 2011 5:39:19 PM Subject: [TMIC] CBS Did anyone see the CBS News piece on TM and Scuba diving? another possibility.
