Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 we are same age then. how long have you had MS for? I was diagnosed in 2001  Pamela Castro Carcelen ________________________________ To: MSCured <mscured > Sent: Tue, May 31, 2011 10:52:49 AM Subject: RE: Prokarin/ Rach  Hi Pamela Yep, there aren't many members but as they've been interested in Prokarin for longer than most of us here, I figure that they might have more info than we do at this stage and joining the group and just asking them about it can't hurt. Yes I'm 38. RachAel - not the usual 'el'. 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: pamcastro@... Date: Tue, 31 May 2011 07:19:11 -0700 Subject: Re: Prokarin/ Rach there are only 6 members in that group. are you also 38 y.o. like me? Pamela Castro Carcelen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 I don't believe that we 'catch' 'MS'. Matter of fact, I don't believe in 'MS' - well, not the way the medical community would have us see it. I believe it is a number of things mixed in together. The vascular component is congenital, the BBB part might be genetically passed to us too, the digestive system's role I think is both genetic and made worse by our parents not knowing any better and feeding us the wrong things as they'd been taught it was 'healthy' and the right thing to feed their children. I think it's just a big ball of 'things' rolled together and labelled as 'MS' - each person's slightly different from the next's. I was finally dxd in '06 and had only shown minimal 'symptoms' from '95. These 'symptoms' are only things seen in hindsight and when looking for the 'triggers'. I stopped doing that a while back because we 'can only run on the ground we're on' (my Dad's favourite piece of advice) and worrying about the 'hows and whys' isn't going to change where I'm at today. I look at what's happening today and trace it back only to help strengthen my theories on my body and situation. I've had the CCSVI procedure and get a bit 'better'/stronger every day! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: pamcastro@... Date: Tue, 31 May 2011 08:01:26 -0700 Subject: Re: Prokarin/ Rach we are same age then. how long have you had MS for? I was diagnosed in 2001 Pamela Castro Carcelen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 Hi , how long ago did you have the CCSVI procedure? Is it true that only lasts 12 months? Pamela Castro Carcelen ________________________________ To: MSCured <mscured > Sent: Tue, May 31, 2011 11:29:33 AM Subject: RE: Prokarin/ Rach  I don't believe that we 'catch' 'MS'. Matter of fact, I don't believe in 'MS' - well, not the way the medical community would have us see it. I believe it is a number of things mixed in together. The vascular component is congenital, the BBB part might be genetically passed to us too, the digestive system's role I think is both genetic and made worse by our parents not knowing any better and feeding us the wrong things as they'd been taught it was 'healthy' and the right thing to feed their children. I think it's just a big ball of 'things' rolled together and labelled as 'MS' - each person's slightly different from the next's. I was finally dxd in '06 and had only shown minimal 'symptoms' from '95. These 'symptoms' are only things seen in hindsight and when looking for the 'triggers'. I stopped doing that a while back because we 'can only run on the ground we're on' (my Dad's favourite piece of advice) and worrying about the 'hows and whys' isn't going to change where I'm at today. I look at what's happening today and trace it back only to help strengthen my theories on my body and situation. I've had the CCSVI procedure and get a bit 'better'/stronger every day! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: pamcastro@... Date: Tue, 31 May 2011 08:01:26 -0700 Subject: Re: Prokarin/ Rach we are same age then. how long have you had MS for? I was diagnosed in 2001 Pamela Castro Carcelen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 No - there are a lot of nay-sayers and doubters when it comes to CCSVI but who really can say or predict? A lot of people who've had the procdedure haven't changed their diets and lifestyle......a lot of them haven't researched well enough to know how to limit the effects of their condition. Hey, who's to say though really? It's all brand new so the studies which are being released now are good things to make note of. I just had my 6 month check up and haven't had any real restenosis - my case was different to a lot of others' cases though. I'm on the Best Bet Diet and limit my stresses - I believe that these two things have helped out of sight! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: pamcastro@... Date: Tue, 31 May 2011 15:07:35 -0700 Subject: Re: Prokarin/ Rach Hi , how long ago did you have the CCSVI procedure? Is it true that only lasts 12 months? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 > how long ago did you have the CCSVI procedure? Is it true that only lasts 12 months? > Pamela Castro Carcelen Pam, I know you were talking to but I've had the CCSVI treatment too. I actually had it three times, June 2010 (a few weeks of benefits), Aug 2010 (6 months of benefits), Mar 2011 (symptoms came back but there were no blockages, nothing to fix, little benefits). Still, I'm glad I had it. I've had MS since 1997. Overall the CCSVI treatment was beneficial. Pino Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Hi ladies CCSVI is a congenital condition. It is with us from birth - we don't 'get' it and that part of 'MS' is with us from birth setting us up to end up being diagnosed with 'MS'. The whole thing is a new Science and whilst many restenose, not everyone does. It depends on diet,lifestyle, the ferritin our bodies produce due to stress and a whole heap of things. 'MS' is something which has ties to CCSVI and I believe is closely tied to it - just as Diet, an impaired BBB, and a lack in the nutrients which many of us need to take is/are. The whole thing is a bit of a jigsaw and whilst yes, some restenose, others don't - that doesn't mean that if you have the procedure you'll restenose. That isn't a guaranteed occurrance. As usual, it is an 'each to their own' thing - each person's 'MS' is different due to this. I write 'MS' in this manner because I no longer believe in 'MS' as what Neurologists would have me believe in it. I think they're heading in the wrong direction with it - but that's my personal opinion based on studies, research and people's results. (spelled with an 'ael') 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: laura.laurapino@... Date: Wed, 1 Jun 2011 14:09:10 +0000 Subject: Re: Prokarin/ Rach Pam, I know you were talking to but I've had the CCSVI treatment too. I actually had it three times, June 2010 (a few weeks of benefits), Aug 2010 (6 months of benefits), Mar 2011 (symptoms came back but there were no blockages, nothing to fix, little benefits). Still, I'm glad I had it. I've had MS since 1997. Overall the CCSVI treatment was beneficial. Quote Link to comment Share on other sites More sharing options...
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