Sometimes I think that doctors don't have a clue! - Roger in Kennewick, WA
----- Original Message ----- From: "john snodgrass" <jcs...@yahoo.com> To: "Elizabeth Clark" <xbeecla...@gmail.com>, "Susan Kleinz" <skle...@cox.net> 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 <xbeecla...@gmail.com> To: 'Susan Kleinz' <skle...@cox.net> 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] 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.
