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PostPosted: Fri Sep 16, 2011 10:15 pm 
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http://www.cottagecountrynow.ca/news/ar ... -good-news

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Parry Sound MS sufferer gets good news

PARRY SOUND - After years of hoping for any sign of her condition improving, Dawn Smith can now move her fingers.
The Parry Sounder who was diagnosed with Multiple Sclerosis (MS) in 1983, found out previously blocked veins had reopened, during a trip to Rhode Island for surgery.
Smith, who traveled to the United States planning to have a liberation treatment to open blocked jugular veins, constricting blood flow to the central nervous system, was told she was one of four people out of 400 patients, whose veins reopened without the treatment.
The trip was her second venture to Rhode Island, after being turned away the first time due to Cellulitis, an infection in her legs. When the doctor looked at her veins as part of a pre-surgery procedure, he was pleased to tell her it wasn't needed.
"He told me it was probably because of the baby aspirin I've been taking," said Smith Wednesday. "He was amazed."
Previously, Smith suffered from severe pressure headaches, leg spasms and couldn't move her body from the neck down.
Now, she is able to lift her shoulders up and down, her headaches have subsided, her leg spasms aren't as severe and when she's not feeling too hot, she can move her hands.
She can even manage to pull her arms back towards her body, if they are stretched outwards.
For Smith, it's a miracle she'd only ever dreamt of.


found this posted on reddit by user lindeeana.

I think this is promising that some people may be able to fix their vascular problems with 'natural' solutions...


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PostPosted: Fri Sep 16, 2011 10:53 pm 
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This woman was most-likely misdiagnosed with MS in 1984. She may have Hughes Syndrome (antiphospholid syndrome) which is treated with aspirin--it's a disease of hypercoagulation, and is often misdiagnosed as MS. It's only become more prominent in the past 15 or so years, after she was dx w/MS.

There is a simple blood test for APS. It is a differential diagnosis for MS, but rarely tested. We asked for it for Jeff. He was negative.

http://www.hughes-syndrome.org/symptoms.htm

Glad to see she is pursuing physical therapy. Many misdiagnosed w/MS who go on to learn they have APS recover abilities. She should be tested for APS...stronger blood thinners (such as coumadin) might be more appropriate for her.

Quote:
Patients in whom MS was diagnosed — the disease affects about 85,000 people in Britain — have experienced seemingly miraculous recoveries on learning the true cause of their illness, in some cases after decades of ignorance. Paralysed patients have regained the ability to walk and others have overcome debilitation, headaches, confusion and short-term memory loss with treatments involving blood-thinning drugs such as aspirin and warfarin.

http://www.timesonline.co.uk/tol/news/u ... 615514.ece

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Fri Sep 16, 2011 11:06 pm 
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Hi!


Like I didnt see this coming, no offence cheer but I expected you or Cece to immediatley respond here.

Fiona

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PostPosted: Fri Sep 16, 2011 11:23 pm 
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Joan, you are incredible. Thanks for sharing


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PostPosted: Fri Sep 16, 2011 11:40 pm 
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But then Joan: why was she a candidate for the procedure the first time? I assume a blockage was obvious. Does the aspirin 'unknot' the veins too? It is said she's been postponed because of cellulitis.


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PostPosted: Sat Sep 17, 2011 3:24 am 
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Algis wrote:
But then Joan: why was she a candidate for the procedure the first time? I assume a blockage was obvious. Does the aspirin 'unknot' the veins too? It is said she's been postponed because of cellulitis.


Yes, it is not clearly said, but it seems that they were patients going for a treatment after a previous test at home.

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PostPosted: Sat Sep 17, 2011 5:56 am 
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Algis wrote:
But then Joan: why was she a candidate for the procedure the first time? I assume a blockage was obvious. Does the aspirin 'unknot' the veins too? It is said she's been postponed because of cellulitis.


That's a good point Algis. Though I think we're all drawing a lot of conclusions from a small set of facts. We don't really know if she did have MS or Hughes. Nor do we know if the aspirin really did help her. That's the problem with these media stories, they rarely provide a complete picture and the facts they mention can't be confirmed.


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PostPosted: Sat Sep 17, 2011 9:58 am 
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Having APS could possibly make jugular blood flow appear abnormal on doppler, since it causes clotting, hypercoagulation and slowed flow. But ikulo's right. It's hard to know the whole story--these press stories are often not very precise.

I'm sorry if my postings annoy fiona, but I was hoping to get more info out about Hughes Syndrome, since it is a differential diagnosis for MS, and aspirin would certainly make her feel better if she had APS. The endothelial health program uses the same principal of anticoagulation, healing of inflammation and helping blood to flow more normally, with diet, exercise and supplements. Jeff did well on it for 2 years prior to his venoplasty. It got his ESR/SED rate down, his liver enzymes back to normal, and got rid of petechiae. But his veins were still mangled...
http://www.ccsvi.org/index.php/helping- ... ial-health

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Sat Sep 17, 2011 10:06 am 
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The doppler testing is unreliable, compared to what is found what the actual procedure venogram is done. The doppler also is not as informative about the azygous. I might've had the procedure anyway, and taken what's found on IVUS as definitive. I also would definitely get that APS blood test. Really interesting case. I hope nothing has been missed. It sounds like she has a high degree of mobility impairment.


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PostPosted: Sat Sep 17, 2011 11:12 am 
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thanks cheer.


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PostPosted: Sat Sep 17, 2011 11:19 pm 
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Cheer,

I hope that you get to read this. My PM facility doesnt work so I cant sneak it in through the backdoor, so have to do it out in the open, andrightly so. I did the one thing to you what I hate others doing to me and I judged you, I dont know you, I had no right to do that, it was wrong of me.

I am sorry I did that,

no excuse I know but I was particularly irked since Thursday, back to normal today. Just think your lucky stars that you dont have to live with me, as my son does. (mind you he makes me laugh on days such as those, he knows me so well)

So I do apologise and it will neva eva happen again yeah!

Fiona p.s. and you had a very valid point about hughes

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PostPosted: Sun Sep 18, 2011 9:38 am 
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Let's return to facts:
1 - CCSVI syndrome is found in MS and other conditions (it may occur in Hughes syndrome, we do not know).
2 - Doppler indicates restricted veins (it does not fully diagnose all instances as Cece explained).
3 - Catheter venogram and IVUS are required to indentify all problems. (These tools require a skilled operator and investigation of all possible veins).

This is an interesting observation reported by Daniel. All or none of the comments made be correct, we just don't know !!!

MarkW

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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html


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PostPosted: Tue Sep 20, 2011 5:38 am 
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MarkW wrote:
Let's return to facts:
3 - Catheter venogram and IVUS are required to identify all problems. (These tools require a skilled operator and investigation of all possible veins).
I would guess that even the most skilled operator would say he/she/we are yet at the stage they can identify "all" problems.


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PostPosted: Tue Sep 20, 2011 7:45 am 
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all I'm commenting on is what the story reports...and as we've learned, the press is not always factual.
BUT
if this woman regained mobility from taking aspirin, it's not placebo (she didn't know that would do anything, she thought she needed venoplasty) It's most likely coagulation related, like APS, because that's what aspirin changes. And, she doesn't have CCSVI.
that's all I'm saying-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Tue Sep 20, 2011 8:16 am 
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CureOrBust wrote:
MarkW wrote:
Let's return to facts:
3 - Catheter venogram and IVUS are required to identify all problems. (These tools require a skilled operator and investigation of all possible veins).
I would guess that even the most skilled operator would say he/she/we are yet at the stage they can identify "all" problems.

There was a recent abstract from the conference where Dr. Dake just spoke, that showed that with IVUS the researcher was able to identify about 40% more areas of stenosis than he could from flouroscopy alone. That's considerable!
cheerleader wrote:
if this woman regained mobility from taking aspirin, it's not placebo (she didn't know that would do anything, she thought she needed venoplasty) It's most likely coagulation related, like APS, because that's what aspirin changes. And, she doesn't have CCSVI.

I agree with this. I'd quibble that it's not entirely known if she has CCSVI or not, because she did test positive for CCSVI the first time.


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