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#41 | |||
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In Remembrance
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They did report some neck and shoulder pain due to the procedure, lasting about 2+ months. There was one 100% positive report of, "my MS is gone".. She had the procedure about a year ago..(the longest) It didn't look quite as positive as I expected, but time may change my mind. ![]() Here is the link to the reports... http://www.thisisms.com/ftopict-8346.html
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | AfterMyNap (02-06-2010), gonnamakeit (11-23-2009), Grammie 2 3 (11-23-2009), Lady (11-27-2009), Riverwild (11-25-2009), tkrik (11-23-2009) |
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#42 | |||
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Junior Member
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This would be awesome but no more false promisses.After all the disappoitment of MBP8298....another miracle crash and burn.The last letter from that study is that my drivers licence could be taken.Watch for studys its a very lonely thankless job! Jim
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#43 | |||
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New Member
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Just joined Neuro Talk. I find this CCSVI discovery amazing. Is there suggested methods towards fast tracking this procedure?
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#44 | |||
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Magnate
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![]() Won't see my GP till Dec. 18 as it is.. I may call offices of vascular doctors regardless of GP and run it by several secretaries. I'm skipping my neuro on this and letting HIM call me if he catches on, since my last words in his office were "contact me if there's a big breakthrough or orals become available". We'll give him time though ![]() Welcome to Neurotalk Kazzman, nice to meet you ![]()
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#45 | |||
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Wise Elder
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Not sure about the fast tracking. I would think the pharmaceutical companies would put up a pretty good fight against that since they may lose lots of $$$$'s. Sadly, it's not about the patient. |
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#46 | |||
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Member
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Sally, I think some people aren't necessarily viewing CCSVI as the "cure" in terms of eliminating all symptoms but as a way to stop MS progression. In other words, for some people they just want to remain stable where they are and not get worse. Whether or not the brain can repair itself after the damage is already done and the veins are opened up after the procedure is another story. I've been reading a lot on thisisms.com about CCSVI for the past few months. You are right that nothing really "miraculous" is jumping out but people are reporting improvements in fatigue (no more napping), cognition, reduced spasticity, ability to walk longer without resting. The doctor at Stanford has only been doing this since May. I guess time will tell!
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On Tysabri and love it. . |
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#47 | |||
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Member
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I forgot to add that the MS Society of Canada just announced today they will give out research grants to study CCSVI. That is really significant stuff!!
http://www.mssociety.ca/en/releases/nr_20091123.htm Also check out: http://www.mssociety.ca/en/research/...091021_faq.htm
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On Tysabri and love it. . |
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"Thanks for this!" says: | Debbie D (11-24-2009), dmplaura (11-23-2009), gonnamakeit (11-24-2009), Riverwild (11-25-2009), SallyC (11-23-2009) |
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#48 | |||
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Magnate
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Like you mention, I've accepted I'll likely live in pain I already developed for many years to come, but I want to prevent further damage. Hey... think maybe the MS Hug is actually this restriction of flow in the neck veins? I thought of the Hug right away. .. ... ![]()
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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#49 | |||
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In Remembrance
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Thanks, Natalie.
![]() We are not all of one type of MS, so, Maybe this is the one to stop progression in the people who have this restriction and for the rest of us, it's LDN, ![]() They did say that one of the first signs of having this CCSVI is, Vericose veins in the legs. I don't have that.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#50 | |||
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Elder
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When I told my DH about CCSVI, he asked, "Then why does MS affect people mostly in areas far from the equator?"
Hmmm...maybe more than one thing can hit the body... anyway, I'm definitely going to bring this up at the next neuro visit. Welcome to NT, Kazman! ![]()
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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Ccsvi | Multiple Sclerosis |