MS news

http://news.bbc.co.uk/2/hi/health/8374980.stm

Do these doctors know about this site ?

Is it not Cpni that is shrinking the viens?

Comments

Also, the controls were

Also, the controls were people with a limited range of other neurological diseasesi and "healthy" people.  I wonder how many "unhealthy" people, especially those with a large Cpni load, have pinched jugular or azygos veins?...........Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah, you can add me to

Sarah, you can add me to your list of ppl that have gotton well on the CAPi. I won't be sticking anything in my neck anytime soon. There is no way that you are born with these collapsed and twisted veins. If that were so, you could do ultrasounds of babies and tell who is going to develop MSi. The blockages are developed over time after living with the disease. They didn't find the blockages in any ppl without MS yet new ppl with MS are diagnosed daily. Why didn't they find it before the MS developed? Because something that is present in MS cases causes the blockages. DUH!

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

Well, Sarah, like I said, we

Well, Sarah, like I said, we here at cpnhelp are obviously more intelligent than those at thisisms -- Marie excepted. i have been reading it and I see what you mean but that doesn't seem to be happening here. From what i read in the scientific publications, a recovery from ms via the operation is very unusual Most people simply report a return of energy. That would make a world of difference to me. Being able to use my legs but still having little energy with which to use them would be rather useless. But regaining energy means working a normal schedule again as well as painting, shopping, cooking, travelling and working out to strengthen my weakened legs. It means living again rather than struggling to stay awake. I'll take it. But safely. Trust me -- and all the people here on capi -- that we read these studies with skepticism and act only when well informed.

Nevertheless, I do appreciate your spreading the word about the hazards of the treatment. The warnings ae certainly merited and so thank you.

Nancy

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

  Nobody is doing this in

 

Nobody is doing this in England at the moment, we are more cautious. 

I know someone is doing it in Poland but I don't know about the price.  I know someone from England was operated on at Stanford and she paid in excess of $80,000 plus flights and hotel bills and so on.  Stanford might be part of a study now, but they started the procedure before.  Marie had it done there in May and she is still using her walker.  

Look on ThisisMS and you will see many people with MS claiming that it is a cure.  They are also closing their minds to the fact that one person died on her way home from Stanford from a stroke and one other person has now had open heart surgery because a lose stent migrated to his heart.

I think it could possibly be used as an adjunct, so long as you are aware of the risks which are far greater in veins than in arteries, if you look it up. 

If I had any blocked veins, they were caused by soft tissue swelling caused by Cpni because I don't have any now, judging by the veins above my temples.............Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah, isn't the Stanford

Sarah, isn't the Stanford University operation part of a study? I had thought so. I have not heard of anyone else doing more than testing which is now being done large-scale in Buffalo, NY. For the moment I am curious about testing. Nowhere do I see a contention that removing the blockage is a cure and I consider any safe operation merely an adjunct to capi. After all, something must be causing the body to process iron incorrectly. My cap doctor is sanguine about it and tells me that they are doing the operation (presumably balloon angioplasty) in Poland for $3,000. What's happening in England? We can all crash with you, can't we?

I can only say that those of us who have found our way to cap are obviously extremely intelligent and not likely to do some foolhardy operation. Trust us!

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Nancy, I don't know where

Nancy, I don't know where you are getting your information from, but at Stamford University, stent operations are being done, with varying degrees of success, the worst being a death from a stroke which might have happened anyway but might have been caused by the procedure but certainly wasn't helped by it because the bleeding into the brain couldn't be stopped due to the coumadin, then most recently open heart surgery after a stent came lose and travelled to the heart (see my previous post.)  Since it has only been going on since the start of the year, it is much too soon to talk about long term benefits.

I have known about the procedure since January or February, thanks to Marie Rhodes but I kept quiet about it until I saw some results. One place to look is the CCSVI forum on ThisisMS, but there are so many people there who believe that blocked veins are the cause of MS (!!) and still are willing to have the procedure even when the events I have listed above happen.  Very different from when there were a few deaths after people took tysabri, for instance. 

As far as I know, nobody has doed from taking CAPi..............Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah, from what I have

Sarah, from what I have heard, only  the testing is available and not the operation (unless the ops are part of a study).

Nothing has helped me with energy. I think I've tried them all.

Nancy

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Well Sarah, if I discover

Well Sarah, if I discover stenosis in my neck veins, I shall be sure to insist on balloon angioplasty. If the good results they've had so far in restoring energy hold out, I'll be happy to be another guinea pig. Oink!

Nancy

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Trouble is, at the moment

Trouble is, at the moment only stents seem to be available in th US and I just read this:

http://www.thisisms.com/ftopict-8928.html

One of his stents migrated pretty promptly to his right ventricle, meaning open heart surgery.

Surely other things can help with energy: CAPi did for me, and tons of B12...............Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

No, I don't think it is just

No, I don't think it is just about making money but it is  new thing and to my mind not properly thought out. It does help a lot of people but it can be dangerous, especially the stenting rather than the balloon angioplasty preferred  by Zamboni...............Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

So it is about MONEY,making

So it is about MONEY,making money and not seeking the cause,making money from peoples misfortune is wrong,so wrong.

CPNi,capi oct 09,NAC2400mg,Doxyi 100mg,full sups,

Moving to dr Stratton protocol next month .

  I just saw his on the

 

I just saw his on the CCSVI form of ThisisMS, written by the initial advocate:

"Complications reported by Dr. Zamboni regarding "The Liberation Procedure"
-headache, nausea
-restenosis and need for reballooning

Complications self-reported by venous stent patients-
-headache, nausea
-accessory nerve damage caused by pinching in the lumen
-vagus nerve aggravation caused by pinching in the lumen
-risk of bleeding and other complications including stroke, due to use of coumadin, heparin and blood thinners as part of aftercare
-risk of venous stent migration into larger veins and the heart
-restenosis of stent site and need for ballooning of stent
-unknown patency for stents in jugular veins
-allergic reactions to pain medications administered during procedure

Risk for both angioplasty and stent procedure:
tearing of veins by catheter
infection
thrombosis/clotting"

this is the least I can do. So, so sorry-please post other issues if I have forgotten any.
cheer"

One person has died already from a stroke after the procedure.  The bleeding couldn't be stopped because of the coumadin she was taking. Stents can also come lose and travel down towards the heart, then get stuck enroute, probably in the lungs.  So, be warned, everybody and be patient because you might well end up better without stents or balloons, like Rica, Mack, Kim and I.  And all the people whose names I have forgotten or don't know, or who I do know but you don't..............Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Zamboni and presumably the

Zamboni and presumably the others, aren't interested in what causes the pinching of the veins: surgeons like to be surgeons, after all, not physicians. Cpn causes soft tissue swelling and there is lots of soft tissue around the veins involved. 

Everything will come right in the end, (that's me after months of agitation about this) and the procedure should not cause damage and maybe will help many people.  Obviously I think it would help more if done in combination with CAPi, which helped me enormously just by itself, but medical things take time, years and years in fact..............Sarah

An Itinerary in Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

You could contact the

You could contact the bbc,they like a bit of medical research news and that will put you on the map!!!

CPNi,capi oct 09,NAC2400mg,Doxyi 100mg,full sups,

Moving to dr Stratton protocol next month .

No. And yes, probably. Cpni

No. And yes, probably. Cpni was only discovered in the 1990's and many doctors are unaware and/or sometimes resistant to new information. We spread the word as best we can.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi