My MS Journey

Sasktchewan MLA touts CCSVI treatment

2012-02-10T19:17:00.000-04:00

A lot of folks have said that if our politicians had MS, they would see the CCSVI treatment controversy differently. Here is some evidence of that: http://www.ctv.ca/CTVNews/Health/20120209/Saskatchewan-MLA-touts-controversial-MS-therapy/

Nature of Things program on MS, CCSVI

2012-02-10T02:17:00.001-04:00

The Nature of Things program on the MS/CCSVI controversy aired last night Nature of Things episode . I didn't watch it yet (no CBC in Spain!) but my wife did see it and said she thought it was fairly well done. I'll either watch it online or when I get back home. It's not up on iTunes, yet.

While in Spain, good news in Saskatchewan

2012-02-08T05:36:00.001-04:00

While I am in Spain on business, I get to hear some good news from our hard-working CCSVI friends in Saskatchewan: http://ccsvi-ms.ning.com/profiles/blogs/saskatchewan-patients-finally-have-follow-up-care-after-ccsvi-pro?xg_source=msg_mes_network... well done, folks! The original universal health care province continues to lead the way!

Metals in the brain

2012-02-01T19:38:00.000-04:00

More ammunition for those who say that metals in the brain (such as those accumulating because of poor blood flow, perhaps) may be a major cause of brain degeneration: Wall Street Journal article.

Research Teams Report Studies on CCSVI and MS

2012-01-28T12:02:00.000-04:00

I look forward to seeing the results, though I still say that the choice of researchers and research projects was somewhat suspect: Press Release.

Off to Spain

2012-01-25T01:25:00.000-04:00

I'm off to Madrid to discuss a new business venture in a week and a half... hopefully my fatigue and balance symptoms will stay in control for the trip and series of meetings. So far, since (after my retirement at the end of December) I've been able to teach a course (and am enjoying it) and doing the research on this new venture has been a hoot, so I'm not too worried about it. I'm not crazy about airline travel these days, though.

Still can't find it...

2012-01-25T01:19:00.002-04:00

I'm still unable to find a link to Dr. Hewett's webinar... do any of my readers know where it is?

Good Webinar by Dr. Hewett

2012-01-19T15:19:00.001-04:00

I'm just finished watching/listening to a webinar on CCSVI and the Haake protocol MRI measurement of blood flows... a good presentation. If the presentation is posted to the web, I'll put the link up here.

Saskatchewan... more

2012-01-14T12:26:00.000-04:00

And here is the Macleans article by our friend Ann Kingston: http://www2.macleans.ca/2012/01/13/saskatchewan-goes-rogue-on-ms-clinical-trials/

Saskatchewan moves ahead with CCSVI treatment

2012-01-13T14:23:00.001-04:00

I thought this was old news, but maybe its now confirmed that the Saskatchewan government will be sending some of its citizens to Albany, New York for CCSVI treatment: http://www.youtube.com/watch?v=TuXTInyzRc8

Physio for MS patients treated for CCSVI

2012-01-07T13:18:00.000-04:00

Here is an interesting Radio-Canada news item (from 11:45 to 14:40 in the news video - sorry, in French only) about an innovative physio program set up for MSers who have had CCSVI treatment: Radio Canada show. Wouldn't it be great if this could be shared with physiotherapists everywhere?

New Drug Shows Promise Against Multiple Sclerosis

2012-01-07T12:07:00.000-04:00

Okay, maybe its just another new drug that may not really pan out or may have terrible long-term effects, but it still may be worthwhile following this: http://www.sciencedaily.com/releases/2011/11/111101173638.htm

More research about CCSVI and MS

2012-01-05T22:40:00.000-04:00

Bit by bit, the knowledge grows: http://multiple-sclerosis-research.blogspot.com/2012/01/research-imaging-ccsvi.html.

Australian TV Show

2011-12-28T14:07:00.002-04:00

In case you didn't catch it on Michele Walsh's Facebook posting, here is a link to an ABC TV news story about CCSVI: http://www.abc.net.au/7.30/content/2011/s3399100.htm. Looks like our Australian friends have almost as much trouble as we do... though at least they can get it done in private clinics in-country.

Oh, and I found interesting the the neurologist's description of the CCSVI theory (certainly he wasn't sneering, was he?)... was he trying to dumb things WAY down for the TV audience, or did he just never bother to read up on the latest research and findings? Geez!

Christmas is almost here!

2011-12-24T11:19:00.000-04:00

We're at the cottage where we are certainly going to have a white - and cold - Christmas this year. The bay is starting to freeze over, earlier than last Christmas.

To all my readers, may you have a happy holiday, filled with love and leaving many precious memories - and not too many more pounds!

Iron levels in the MS brain

2011-12-17T16:39:00.001-04:00

More about brain iron levels and MS progression: CCSVI Locator copy of an article.

CCSVI -- A New Phrenology?

2011-12-17T16:35:00.000-04:00

Another slanted view from some in the medical community: CCSVI Locator copy of Medscape article. Note the sarcastic tone, hypocritical use of anecdotal evidence and prejudicial wording... don't they realize that their credibility is drastically reduced when they speak down to us that way, instead of voicing healthy skepticism and showing evidence that they have actually tried to look at the issue objectively?

Conservative MP pushes MS assistance

2011-12-17T16:25:00.000-04:00

Every little bit helps: http://www.meridianbooster.com/ArticleDisplay.aspx?e=3406544

A raffle for CCSVI treatment

2011-12-16T09:44:00.000-04:00

Here is a message I was forwarded from my friend, Richard Beecroft, who is asking people to buy tickets for a raffle to get a free trip to Mexico, but which will also get him CCSVI treatment:

Hello and I hope you are well.
A friend of mine Richard Beecroft has had MS for the past 40 years. Unfortunately, it is getting worse. Even simple tasks like washing, dressing and walking have become a challenge for Richard. He is also fighting Trigeminal Neuralgia, (an MS complication), which is often so painful he becomes completely debilitated. I’m contacting you today to ask for your support in helping him overcome this devastating illness.
You may have heard of the controversial CCSVI treatment that is changing the lives of MS people all over the world. This procedure is a simple angioplasty that can dramatically improve the health and overall quality of life in MS patients. Richard is a candidate for the CCSVI procedure, (having been already been tested), but he can't get this treatment in Canada. Fortunately, Clinics of the Heart in Cabo San Lucas, Mexico not only offers CCSVI treatments but also has a great way for MS patients, who are financially challenged, to get this treatment. They have created a raffle for a Grand Prize for two to a choice resort in Mexico (see website below). Your purchase of a $10 ticket goes towards both the raffle and the treatment for the MS person.
So, to help Richard, AND for the chance to win a fabulous trip to sunny Mexico, go directly to: http://www.ccsvifunding.org/go/index.php/community?view=member&id=9 and follow the instructions. You can buy your tickets online via a secure PayPal site where your credit card and personal information is protected and not accessible by any others (including the fundraisers). After 1,000 tickets have been sold, the Grand Prize winner will be drawn, and Richard will be able to get his treatment!!
Whether you buy tickets or not, please forward this request to everyone you know. We need to reach as many people as possible so that he can get this procedure done and experience an improvement in his health and quality of life.
Richard would love to answer your questions. Please e-mail him at rdhbeecroft@gmail.com
Thank you very much for your help and support.

I asked Richard what happens if the 1000 tickets aren't sold, and he said that the person running the raffle said that the money would be returned to everyone who bought tickets. Rickard also said that, in his case, that would not be a problem, because he is half-way to his goal (1000 tickets), and his family would buy the rest of the tickets if nobody else did.

CCSVI Alberta Challenges MP Collin Carrie

2011-12-11T02:37:00.002-04:00

CCSVI Society of Alberta challenges MP Collin Carrie's refusal to support Bill C-280: CCSVI Society of Alberta rebuttal.

Vitamin D and MS... again

2011-12-11T01:50:00.000-04:00

I guess Shelley has it right... I do need to get as much vitamin D as I can: http://www.bbc.co.uk/news/health-16086004.

Kirsty Duncan - Second Reading

2011-12-10T12:06:00.000-04:00

Here is Kirsty's speech to Parliament (in the Hansard), introducing her CCSVI bill for second reading: http://openparliament.ca/hansards/2432/301/, and here is the video of her speech: http://vimeo.com/33427132. Very well said, Kristy, and thank you from all MSers!

More clues to causes of MS?

2011-12-08T17:31:00.001-04:00

Thanks to Shelley for pointing this out to me:

http://www.bbc.co.uk/news/health-16086004

Going to California in March

2011-12-07T21:51:00.000-04:00

Well, enough of my symptoms have returned (somewhat) that I've decided to be re-assessed and then (if warranted) treated at Synergy Health in California. Wanna guess what I'm doing during March Break?

Register on these mailing lists

2011-12-05T09:51:00.001-04:00

If you are interested in MS and CCSVI breaking news, then I would strongly advise you to register on the mailing lists for these sites:

Ken Torbert's CCSVI news blog, the CCSVI Locator.
The National CCSVI Society's Weekly News Digest.

There are, of course, many interesting ongoing discussion on CCSVI in the ThisIsMS.com site. Being a "friend" or group member of the CCSVI in Multiple Sclerosis Facebook site will keep you in touch with a lot of the research and developments that are happening in the subject area. As well, the Direct MS site, which used to focus on MS and diet, has now set its sights on bringing CCSVI research to Canada.
If you have any other sites that you feel I should include in this list, please let me know.

My letter to my MP regarding Bill C-280

2011-11-29T00:29:00.001-04:00

This is what I sent:

Dear Minister Ashfield,
I am writing this message to ask you to please support Bill C-280, an Act to establish a national strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI). While I appreciate that research takes time, I am worried that the current approach of the federal government regarding CCSVI research will result in minimal progress, too much expense and too much waiting for MSers across the country who need answers sooner rather than later.

If you want to send a message to your MP, get his e-mail address here: MPs' e-mail addresses. Please send your message before Wednesday.

Abnormal Iron Content in MSers

2011-11-29T00:01:00.000-04:00

More evidence backing up the CCSVI theory: http://www.ajnr.org/content/early/2011/11/24/ajnr.A2773.abstract

The Great Debate: CCSVI and MS

2011-11-24T13:33:00.000-04:00

Good reading from the CCSVI Alliance: CCSVI Alliance article.

Hansard extract - Kirsty Duncan

2011-11-19T08:59:00.000-04:00

Here is Kirsty going to bat for us again, pushing the feds to stop wasting time (and MSers lives) and to get started on Phase II and Phase III trials NOW: Hansard comments.

Innovative Protocol of Treatment for MS

2011-11-18T14:53:00.000-04:00

This is interesting: http://www.news-releases.uiowa.edu/2011/November/111411MS_study.html?mid=52.

MS Society of Canada

2011-11-17T23:20:00.000-04:00

OK, MSers, it's time to make yourself heard! Due to a great drop in donations and sponsorships, the MS Society of Canada struck a renewal task force that has, so far, produced a first draft paper concerning Issues and Outcomes. The MSSC would like MSers and those affected by MS to read the paper (at this link: Outcomes and Issues Paper) and then complete the survey at this link: http://www.surveymonkey.com/s/9HWMCZ8.

There may be reasons to be suspicious of the MSSC, but there ARE good people in the organization, and I think it is worth this effort to try to get it back on the right track. Read the paper and take the survey, please.

No Cure?

2011-11-03T19:18:00.002-03:00

This pretty well describes what I believe the research to date says about MS, MS symptoms and CCSVI treatment: Joan Beal's Facebook article.

My status after 18 months

2011-10-31T17:32:00.000-03:00

It's hard to believe that it is now over 18 months since I was liberated. It's time I gave a status update:

Energy Levels: I’m still enjoying much more energy and less fatigue than before my liberation treatment, when I sometimes had to take 4 naps to get through a day. However, I have noticed more of a tendency to take a nap (or even two) some days in the last two months or so, but it’s hard to say if that is due to a return of CCSVI or because I’ve been fighting off the viruses that everyone else around me seems to be catching.

Balance: In my objective measures of balance I have still maintained the improvements I saw after liberation, but subjectively I feel that I’ve lost ground there lately. Of course, it could just be that my foot drop is getting worse, thereby making me trip more but, again, it sometimes makes me wonder if I am restenosing at a very slow rate.

Bladder Issues: This has not changed at all since liberation, it is still much better than it was in the months leading to my trip to Poland.

Dexterity: I think that my manual dexterity has gotten a little worse in the last few months, though that varies so much hour-to-hour that it’s really hard to be sure of the trend-line.

Mobility (Foot Drop): My foot drop has gotten worse in the last few months, I believe. I don’t think that it ever improved after liberation, just that my better balance allowed me to walk better and trip less often.

Left-side Strength: I believe that the underlying muscle signals haven’t really improved, per se, but since I exercise almost every day, some of my muscles are somewhat stronger.

Sleeping: I still take a sleeping pill every night, but I do seem to have fewer nights where, despite a sleeping pill, I can’t fall asleep.

If you’ve been following my blog, you know that at my last follow-up in Bangor they had noticed some reflux and possible blood flow problems, enough to say that I again (or still) have some CCSVI. Since then I’ve wondered if I am restenosing in a serious way and, if so, what I should do about it.

A CCSVI breakthrough?

2011-10-25T19:52:00.000-03:00

Interesting article. But more informative than Julie's article is the commentary below it, including clarifications and explanations from Joan Beal and Dr. Arata, among others. You have to slog through some of the usual muck from Colin Rose, but it's worth it: About.com article.

And still more MS research of interest

2011-10-24T11:42:00.000-03:00

Wow, the day I decide to put these up, I get 3 mailings regarding MS research articles. Here's the third (including two Spanish language articles):

Diferente contexto inmunogenético entre la neuromielitis óptica y la esclerosis múltiple

Blanco Y, Ercilla-González G, Llufriiu S, Casanova-Estruch B, Magraner MJ, Ramió-Torrentà LI, Mendibe-Bilbao MM, Uclés-Sánchez AJ, Casado-Chocán JL, López de Munain A, Ramo-Tello C, Santos-Lasaosa S,

Rev Neurol 2011; 53: 146-152

Leer noticia

Efecto del apoyo social en los síntomas depresivos de pacientes portugueses con esclerosis múltiple

D. Costa, M.J. Sá, J.M. Calheiros

Resumen / PDF

Research article
Decreased brain venous vasculature visibility on susceptibility-weighted imaging venography in patients with multiple sclerosis is related to chronic cerebrospinal venous insufficiency
Zivadinov R, Poloni GU, Marr K, Schirda CV, Magnano CR, Carl E, Bergsland N, Hojnacki D, Kennedy C, Beggs CB, Dwyer MG, Weinstock-Guttman B
BMC Neurology 2011, 11:128 (19 October 2011)
[Abstract] [Provisional PDF]

Research article
Validation of the Spanish version of the Multiple Sclerosis International Quality Of Life (MusiQoL) questionnaire
Fernandez O, Fernandez V, Baumstarck-Barrau K, Munoz L, Gonzalez Alvarez MM, Arrabal JC, Leon A, Lopez-Madrona JC, Bustamante R, Luque G, Guerrero M, Verdun di Cantogno E, Auquier P, the MusiQoL study group of Spain
BMC Neurology 2011, 11:127 (18 October 2011)
[Abstract] [Provisional PDF]

Neurology & Neurosurgery

ECTRIMS/ACTRIMS Botox Treats Tremor in Multiple Sclerosis
Medscape Medical News

MS Articles of Interest

2011-10-24T10:43:00.001-03:00

Since I am supplied with these links to papers (abstracts and full papers) from the Cochrane Review people on about a weekly basis, I have asked and received permission from them to post the links here. If you wish to be put on their MS-related mailing list, let me know and I'll send your name to them. Remember, Cochrane Reviews is not endorsing any of these research articles, rather simply letting us know about them:

1. HEDSTROM AK, Akerstedt T, Hillert J, Olsson T, et al.

Shift work at young age is associated with increased risk for multiple sclerosis.

Ann Neurol. 2011 Oct 17. doi: 10.1002/ana.22597.

http://amedeo.com/p2.php?id=22006815&s=ms&pm=3e6577545bebe72

ABSTRACT available

2. BERLANGA-TAYLOR AJ, Disanto G, Ebers GC, Ramagopalan SV, et al.

Vitamin D-gene interactions in multiple sclerosis.

J Neurol Sci. 2011.

http://amedeo.com/p2.php?id=22000399&s=ms&pm=3e6577545bebe72

ABSTRACT available

3. SEDANI S, Lim M, Hemingway C, Wassmer E, et al.

Paediatric multiple sclerosis: examining utility of the McDonald 2010 criteria.

Mult Scler. 2011.

http://amedeo.com/p2.php?id=22013145&s=ms&pm=3e6577545bebe72

ABSTRACT available

4. FRANCHIGNONI F, Giordano A, Ferriero G.

On dimensionality of the DASH.

Mult Scler. 2011;17:891-2.

http://amedeo.com/p2.php?id=21642371&s=ms&pm=3e6577545bebe72

5. TEUNISSEN CE, Koel-Simmelink MJ, Pham TV, Knol JC, et al.

Identification of biomarkers for diagnosis and progression of MS by MALDI-TOF

mass spectrometry.

Mult Scler. 2011;17:838-50.

http://amedeo.com/p2.php?id=21505015&s=ms&pm=3e6577545bebe72

ABSTRACT available

6. RITZENTHALER T, Dailler F, Vukusic S, Confavreux C, et al.

First attack of Devic's neuromyelitis optica following endovascular treatment and

rupture of brain arteriovenous malformation.

Mult Scler. 2011;17:895-6.

http://amedeo.com/p2.php?id=21467187&s=ms&pm=3e6577545bebe72

7. KIRA J.

Astrocytopathy in Balo's disease.

Mult Scler. 2011;17:771-9.

http://amedeo.com/p2.php?id=21459811&s=ms&pm=3e6577545bebe72

ABSTRACT available

8. VILLAR LM, Espino M, Roldan E, Marin N, et al.

Increased peripheral blood CD5+ B cells predict earlier conversion to MS in

high-risk clinically isolated syndromes.

Mult Scler. 2011;17:690-4.

http://amedeo.com/p2.php?id=21436320&s=ms&pm=3e6577545bebe72

ABSTRACT available

9. RIISE T, Kirkeleit J, Aarseth JH, Farbu E, et al.

Risk of MS is not associated with exposure to crude oil, but increases with low

level of education.

Mult Scler. 2011;17:780-7.

http://amedeo.com/p2.php?id=21343231&s=ms&pm=3e6577545bebe72

ABSTRACT available

10. SHINODA K, Matsushita T, Furuta K, Isobe N, et al.

Wall-eyed bilateral internuclear ophthalmoplegia (WEBINO) syndrome in a patient

with neuromyelitis optica spectrum disorder and anti-aquaporin-4 antibody.

Mult Scler. 2011;17:885-7.

http://amedeo.com/p2.php?id=21300735&s=ms&pm=3e6577545bebe72

ABSTRACT available

11. COLLONGUES N, Marignier R, Zephir H, Blanc F, et al.

High-risk syndrome for neuromyelitis optica: a descriptive and comparative study.

Mult Scler. 2011;17:720-4.

http://amedeo.com/p2.php?id=21239412&s=ms&pm=3e6577545bebe72

ABSTRACT available

12. ENZINGER C, Fuchs S, Pichler A, Wallner-Blazek M, et al.

Predicting the severity of relapsing-remitting MS: the contribution of

cross-sectional and short-term follow-up MRI data.

Mult Scler. 2011;17:695-701.

http://amedeo.com/p2.php?id=21228028&s=ms&pm=3e6577545bebe72

ABSTRACT available

13. GASCA-SALAS C, Gomez-Ibanez A.

[Chronic cerebrospinal venous insufficiency and multiple sclerosis: a review and

update of the subject].

Rev Neurol. 2011;53:555-60.

http://amedeo.com/p2.php?id=22012819&s=ms&pm=3e6577545bebe72

ABSTRACT available

Research article
An open-label, multicenter study to evaluate the safe and effective use of the single-use autoinjector with an AVONEX(R) prefilled syringe in multiple sclerosis subjects
Phillips J, Fox E, Grainger W, Tuccillo D, Liu S, Deykin A
BMC Neurology 2011, 11:126 (14 October 2011)
[Abstract] [Provisional PDF]

Research article
Changes in magnetic resonance imaging disease measures over 3 years in mildly disabled patients with relapsing-remitting multiple sclerosis receiving interferon beta-1a in the COGnitive Impairment in MUltiple Sclerosis (COGIMUS) study
Bastianello S, Giugni E, Amato M, Tola M, Trojano M, Galletti S, Luccichenti G, Quarantelli M, Picconi O, Patti F, Study group t
BMC Neurology 2011, 11:125 (14 October 2011)
[Abstract] [Provisional PDF]

Dr. Bill Code

2011-10-23T13:21:00.000-03:00

I had an opportunity to see Dr. Code make a presentation yesterday in Saint John concerning CCSVI, its symptoms, its possible relationships to MS and other neurological diseases, its treatments, and his ideas concerning vascular health. If you have a chance to see his presentation, I would advise you to do so. Otherwise, get on the National CCSVI Society website (http://www.nationalccsvisociety.org/) to learn more and maybe order Dr. Code's book. I am slowly absorbing and processing what I learned, but I am already changing my vitamin supplement regime based on his advice.

Wheelchair Kamikaze's posting about progressive MS

2011-10-15T15:20:00.001-03:00

A very good summary of his literature search findings: Wheelchair Kamikaze blog. I commented as follows:

I have been diagnosed with SPMS, though my period of RRMS was very short (if it existed at all). Almost 18 months ago I was "liberated", which brought me relief from the symptoms of fatigue, balance problems and bladder problems. My mobility seemed to improve, but that may have been primarily due to improved balance. My dexterity, footdrop and left-side weakness problems have continued and, most recently, may have gotten slightly worse. This seems to be consistent with the results from other progressives after liberation: those with energy, balance and bladder problems often see an improvement, while those who do not have those problems do not see any positive outcomes.

Interesting stories and links

2011-10-13T16:35:00.000-03:00

Here are some recent interesting stories on Ken Torbert's CCSVI Locator blog:

Researcher on CCSVI andSocial Media is Looking for Participants: I did this survey a few weeks ago, but you should consider taking part in this survey.
CCSVI Study in Canada: It looks like Dr McDonald will finally be allowed to study people before and after they are treated for CCSVI.
Large research study finds that 91.5% of MSers have CCSVI: These numbers are very close to what Zamboni originally found, and to the numbers being given by sites treating CCSVI.

I've been remiss...

2011-10-13T01:10:00.000-03:00

I've been a bit busy lately (course preparation, reviewing a paper, etc) and somewhat distracted, but I intend on giving a symptom update sometime before my eighteenth "monthiversary" that comes up at the end of the month. Also there seem to be some exciting things to read about in Facebook and the CCSVI Locator Blog with respect to CCSVI and MS that I'll try to review and summarize when I get the chance.

More disease relationships?

2011-10-04T12:55:00.001-03:00

Here is an interesting message from my friend Shelley in response to my questions between possible links between CCSVI and Parkinson's:

Hi Ted,

I read your blog post about being in Manitoba visiting family and friends and your interest in how CCSVI research ties in with Parkinson’s and I am experiencing the same kind of interest only with Lyme disease. I’m learning that Lyme sufferers are also testing positive for CCSVI upon ultrasound and I know of a few who have gone so far as to have the very same venoplasty procedures as MS sufferers for CCSVI and have had a relief of their symptoms! Sadly, one re-stenosed a month later but he is going to have the procedure a second time. Something big is going on here. I also know of two women in Ontario, who, after watching the same Lyme documentary that I watched this summer that aired on PBS (“Under Our Skin”), have taken it upon themselves to have their blood drawn here and sent to California for Lyme disease testing. Would you believe that both of these women who were diagnosed in Ontario as having MS and had their blood tested in California have tested positive for Lyme disease?!

We don’t have proper Lyme disease testing here in Canada, yet we are very much a tick infested country. Could this be why so many people are diagnosed with MS when they could truly have Lyme disease? Lyme mimics MS. Lyme can produce white lesions on the brain just like MS. The blood test available here is wholly ineffective and creates a high percentage of false negatives and most doctors don’t even know enough about Lyme to even consider it as a diagnosis, let alone think to test for it. The only way to know for sure is to have your blood tested at a lab in California called Igenex, but most people don’t know this. Lyme is a very “political” issue.

I am asking all kinds of questions. I don’t know what this means. Is Lyme and MS the same darn disease? Is a Lyme infection the virus that sets us up for MS later in life? When I was going through my months of hell during my first attack that started in September of 2005, I ended up on a course of antibiotics for a bladder infection in December. I got better right after that and by January had returned to my old self again and had no more MS symptoms. The treatment for Lyme is antibiotics. I’m starting to wonder now if I truly have MS or if I too could have Lyme. Or, did having a Lyme infection manifest into MS? I grew up next to the Vermont border which is a hot bed area for ticks. I was a hiker, runner and horseback rider all of my life. I had woods in my backyard! I was exposed to ticks and remember pulling one off my dog shortly before she died in 2005.

Have I given you more to think about?! If you are interested you can watch “Under Our Skin” for free. You can download it here: http://www.megaupload.com/?d=N2U4M9NA. I think you’ll be surprised at what you see and hear if you watch this film.

Take good care.
Shelley

More about blood physics and its possible impacts

2011-10-04T12:04:00.000-03:00

Here is an abstract of the hypothesis by Dr. Tucker that lays out how the physics of blood flow could lead to MS initiation, progression and/or exacerbation: http://www.medical-hypotheses.com/article/S0306-9877(11)00459-2/abstract.

A week in Manitoba

2011-10-03T18:05:00.000-03:00

I've been enjoying an easy and fun week visiting family and friends in Manitoba... it's been great. However, one of my in-laws has Parkinson's (as does my mother), so I've gotten interested, again, in the research that appears to link CCSVI with Parkinson's.

It's now just over 17 months since I was treated, and things haven't changed much from the point of view of my symptoms, except maybe my walking is a little worse. I sure hope I can get my MRI soon, to see if my mobility problems are actually due (or at least partially due) to problems with my bones rather than MS.

A cure for MS? These claims are somewhat premature

2011-09-25T21:50:00.003-03:00

While this is very interesting and might lead to something worthwhile sometime in the future, I would say it's WAY to early to start making claims about a cure or even treatment: Toronto Sun story. I'll have to look around to see if someone has done an analysis of the research to see if there is at least working theory as to how the lack of these neurosteroids could cause MS pathology. The great thing about the CCSVI hypothesis is that the explanation of how CCSVI could initiate and/or worsen MS made sense right from the get-go... so far I don't see anything like that in the description of this research.

If you're interested you can follow the discussion (by knowledgeable lay people) about the research implications here: TiMS discussion.

Saskatchewan steps up to the plate... in a big way!

2011-09-23T17:54:00.001-03:00

This is good news for Saskatchewan MSers: CBC story... and, in the end, it's good news for all of us.

Kirsty Duncan's - CCSVI Bill - Sep 21,2011

2011-09-23T01:34:00.001-03:00

In case you haven't seen it elsewhere, here is the Youtube video of Kirsty introducing her bill: MP Kirsty Duncan introduces bill in the House of Commons.

Notice from Tim Donovan

2011-09-19T13:30:00.002-03:00

Here is an announcement about a CCSVI event in Saint John:

Dr. Bill Code is a Canadian doctor (anesthesiologist) who has MS and has been treated with venous angioplasty, and is speaking across Canada... Dr. Code and Tim Donovan will be doing a CCSVI seminar in Saint John N.B. on Saturday Oct 22 from 1 to 4 pm at the Lancaster Legion, 714 Wilson St. . We only have room for 300 so make your plans and come to hear Dr. Code. No charge. Donations for expenses will be accepted.

Am I restenosing?

2011-09-15T11:49:00.000-03:00

Over the last few weeks I've had a few days where I felt tired during the day and had a nap/laydown, even twice one of those days. Now, I know that's a long way off from what it was like before liberation when I had a deep, devastating fatigue that required me to take at least a couple of naps every day, sometimes as many as four in a day. However, for a while yesterday I also had a return (for the first time in a year) of that feeling of walking on Jupiter (like huge gravity pulling down on all my limbs), and with the EMMC imaging a few months ago telling me that I still have some indications of CCSVI, I'm beginning to wonder if I need to be retreated. After 16 months of living a much better quality of life, I don't want to let things go too far downhill again without doing something about it.

If it does appear that I am restenosing, where should I go to be retested and, if appropriate, treated? Rhode Island, because they're allied with the facility in Bangor? Somewhere else on the east coast? If anyone out there has advice or can tell me of their experiences, I'd appreciate hearing about it.

More about Fluid Dynamics

2011-09-14T09:20:00.001-03:00

Dr. Beggs describes the physics and fluid dynamics of blood flow, and how this helps to explain some of the symptoms and progress of MS: Youtube lecture video. It takes some time (34 minutes), but explains why some of the those papers pooh-poohing possible impacts of CCSVI on MS patients are by people who don't understand the physics of fluid dynamics.

New Imaging Technique Evaluates Nerve Damage

2011-09-13T16:30:00.000-03:00

Interesting: Science Daily story. And some of this research was done at Laval University.

Observational Study in Canada

2011-09-13T02:07:00.000-03:00

Dr. Sandy McDonald has received approval to do observational studies of MS patients: “An observational study using doppler duplex ultrasound quantifying the occurrence of jugular vein re-stenosis and complications following angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI)". His statement can be found at http://ccsvi-ms.ning.com/profiles/blogs/dr-sandy-mcdonald-irb-approved-observational-study-canada.

Does CCSVI contribute to other neurological diseases?

2011-09-07T09:29:00.000-03:00

Here's an interesting hypothesis, along the lines of those that have been posted in discussion boards regarding possible relationships between CCSVI and neurological diseases, that hypothesizes about a possible way that CCSVI could contribute to ALS: http://www.medical-hypotheses.com/article/PIIS0306987710001301/abstract?rss=yes.

The risks of CCSVI treatment: where’s the beef?

2011-09-07T09:24:00.000-03:00

Here's another good article by Anne Kingston, this time in Macleans, that puts into perspective the "study" that eight Calgary neurologists published that appears to be an exercise in fear-mongering rather than in advancing our knowledge of CCSVI and the impacts its treatment may have: Macleans article.

CCSVI Criteria

2011-09-05T23:23:00.001-03:00

Here's a message from Dianne's husband regarding criteria for diagnosing CCSVI that I don't think I've posted previously:

Ted, this is the gist of an email that we received from Chris Willis, RVT, Coordinator of the Vascular Laboratory at the Eastern Maine Medical Center in Bangor, Maine. He is actually the technician that performed the color Doppler ultrasound on Dianne's IJV's last month. He also did yours if I am correct. We asked him to provide the criteria that EMMC use for evaluating the results of the test as they related to CCSVI. Here is his note:
There are actually 5 criteria for CCSVI:
The 1st criteria is: Gray scale abnormalities of the proximal internal jugular veins.
The 2nd criteria is: Postural changes in the cross sectional area of the internal jugular vein.
The 3rd criteria is: Absence of flow in the internal jugular veins.
The 4th criteria is: Reflux in the internal jugular and/or vertebral veins
The 5th criteria is: Asymmetric flow in the deep cerebral veins. This is done via Transcranial Doppler which we do not do here.
We are not evaluating for CCSVI but checking for patency (definition = The condition of being open, expanded, or unobstructed) of the internal jugular veins. We just follow the CCSVI protocol.
I believe you need to be positive for 2 or more criteria to be considered to have CCSVI.

One-year update from Dianne

2011-09-02T15:11:00.000-03:00

Here is an update sent me by my liberated friend Dianne:

Hi Ted, it has been one year for me since CCSVI angioplasty (aka. MS Liberation Treatment) in Sophia, Bulgaria. I have been fortunate in that the gains that I made post-angioplasty have only improved over time. The relief that I got with respect to the vascular issues of MS such as bladder control, fatigue, numbness, choking and swallowing, brain fog, balance, heat tolerance, and all the other nasty symptoms of MS has remained and I consider myself (almost) a normal person in those regards. I do not take any MS medication but do take vitamins and try to eat as much healthy food as possible. The vascular issues corrected with the CCSVI angioplasty worked for me and have remained. If you remember I had 70% blockage left IJV (2 stenosis), 70% right IJV (1 stenosis), and 70% blockage in the Azygos (with 2 stenosis). I did not have any stents. I had no complications of any kind resulting from the procedure.

We went to Dr. Sandy MacDonald’s Clinic in Barrie in November for a follow-up Doppler after 3 months. They saw normal blood flow in both the IJV’s and the VV’s, with normal collapse of the VV’s inferring normalcy in the Azygos. Great news! This July we went to the Eastern Maine Vascular Center in Bangor for a one year Doppler follow-up. Again my veins were normal with full flow and no reflux. More great news!! Intuitively, we knew that before we went by the way I was feeling….normal!

Now, the neurological issues that I have with mobility have been a struggle. I am still using the hiking poles outside but the dependency is slightly decreasing as time goes on. I just feel more comfortable walking with them by my side. Walking is still a chore if I am out for a while and I get stiff if I stand in one place too long. I went for physio over the winter primarily for strengthening of my legs and that went well. Walking normally definitely is my biggest challenge.

I am doing PNF training (proprioceptive neuromuscular facilitation) for both my left hand and right foot. This is under the direction of a neuro-physiotherapist who I still continue to see. This is a type of physical therapy procedure mostly used by stroke patients to re-train their brain. (http://en.wikipedia.org/wiki/PNF_stretching) Since I know that the MS lesions in my brain are still there, I am working at re-training my brain to bypass these problem areas. I know that this is working as the little finger on my left hand has now re-joined the others on that problematic hand. Before it would wander away from the rest and not participate in the functions of that hand. My left hand is now normal! My right foot still needs to improve. I am not certain exactly where it is without looking down. That’s the proprioceptive part that I am working on. It looks, feels and works (almost) normally but again where it is in relation to my other foot is still not normal (yet).

I have an adult tricycle that I drive around the neighbourhood (still haven’t gone on the city trails yet) and do just fine. I generally go about 1 to 1½ kilometre several times a week. I have been reading again using an iPad2 and really enjoy that. (I had stopped reading years ago as wrestling with a book was just too much.)

I have a new doctor of physical medicine (physiatrist) after firing the last one. He is very supportive and essentially has told me to continue the rehab regime that I am on to continue to improve. I have not seen (or even heard from) my neurologist since she found out that I went for CCSVI angioplasty (even after repeated phone calls and referrals from my family doctor). My family doctor is very supportive.

To sum this all up, I feel dramatically improved since Bulgaria. I consider myself to be (almost) normal in many ways. Mobility is my issue and I am working every day to make myself stronger, more steady on my feet, and confident especially outdoors on grass and other uneven ground. I feel good and my life has been given back to me. I pray that this all stays and that I can participate in my grandchildren’s lives (the first one is on the way!) like a normal Grammy can!

Best regards and good health to all, Dianne.

My mobility problems not due to MS?

2011-08-31T15:10:00.003-03:00

I just came back from an EMG session with my neurologist. After the tests, which showed that most of my nerve conductivity in my (weak) left leg is at the borderline of normal, she reminded me that in my previous MRI's I had shown evidence of degenerative bone disease in my lower spine. This means that a good part of my foot-drop, mobility and left-leg weakness problems could be caused mostly by that, not my MS! If that is the case, I'm not sure what it means with respect to therapy and lifestyle, but perhaps it means I need to develop different coping techniques than what I was using. Now I have to wait for a new MRI to see... Of course, lower back problems don't explain my weak left arm, but who knows, maybe I have some upper spinal problems, too.

PS: It's great having a neurologist who is willing to look beyond my MS to see if some of my symptoms don't have other causes!

A Path to Recovery: Daryl Bryant

2011-08-31T09:07:00.002-03:00

I was sent this letter by someone who has found another path to recovery from many of the symptoms of MS, one that does not depend solely on prescription drugs or CCSVI treatment. I have not read his book, yet, so can't vouch for what's in it, but thought people would like to know about it. If anyone has read it, perhaps you can send me a review.

Dear Ted,

My diagnosis with MS has led me down a bumpy and winding road that I am proud to say has finally brought me to where I am today, a happy and fulfilled man.

Outsiders would probably never be able to guess that at my lowest point with the disease, I actually lost the ability to walk. And now I find myself running at full speed, managing my own business and building a life with my wonderful wife and newborn.

I want people to know that they can once again regain control of their lives the way I did. But it is going to be a fight. Those suffering from the disease or have loved ones with multiple sclerosis understand the lows and the obstacles.

My story is here to give hope. My life was literally turned upside down and once I worked past my denial, I found my way. No two cases of MS are alike, it is up to each individual to listen to their bodies and find the regimen that brings the greatest success.

A combination of dietary and exercise changes along with holistic and pharmaceutical medication—this is the formula for my triumph. Dedication to proactive positivity is what helped me find my way.

At my darkest moments with MS I was extremely depressed and suicidal. I have never been prone to those tendencies prior to my diagnosis. I was an athlete throughout my life and when I learned I had MS, the rug was literally pulled out from under me.

It is my hope that my story will offer you inspiration and remind you that there are others out there battling this disease and winning.

This is why I published my book MS Book - MS Living Symptom Free, because I can proudly say that I won. And you can beat it too. I divulge into what has helped me and other options for MS patients.

Each chapter explains healthy diet options, exercises specific for strengthening where we are weakest and medication. I share my story while trying to touch on all the important parts of recovery.

Thank you Ted for listening and helping me share my story. And I can’t explain how grateful I am for your blog and support!

If any of your readers would like to know more about my book it can be found here: MS Book - MS Living Symptom Free.

Wishing everyone the best of luck in their MS journey!

- Daryl Bryant

My results after 16 months

2011-08-28T16:59:00.000-03:00

This is the graph of my results 16 months after my treatment:

CCSVI Links to Parkinsons, other Neuro Diseases?

2011-08-28T16:20:00.001-03:00

It's not a new idea for those familiar with the CCSVI discussions, but some of the discussion boards and Facebook pages have recently been referring to a story about Parkinsons patients who have seen their symptoms somewhat alleviated after CCSVI treatment. If I see something more definite, I'll post it.

A Cardio-Vascular Surgeon Responds

2011-08-28T11:51:00.000-03:00

Earlier this week some Calgary neurologists "expressed concern" that CCSVI treatment was "dangerous" given the fact that some liberati had developed serious complications (Montreal Gazette story), though when you actually read beyond the top few paragraphs you quickly realize that the headline is misleading: there is no real "study" and the actual complication rate is low. Now a Toronto cardio-vascular surgeon has responded to these "findings": CCSVI Ontario note.

We find no smoking gun on the genetic level

2011-08-22T19:33:00.000-03:00

A study of sets of exact twins, one with MS and the other without, found no genetic differences between them, casting some doubt on the interpretation of results of an earlier study where the researchers appeared to say "it's all about the genes, and specifically those genes related to autoimmune diseases": Twins Gene Study.

A strong argument for CCSVI treatment made in Alberta

2011-08-21T23:46:00.000-03:00

A fairly good story: http://www.youtube.com/watch?v=SKV7W_VAMqo. Tim Donovan and others speak of improvements and hope.

Blood Flow and MS: the Physics of Fluid Dynamics

2011-08-18T23:32:00.000-03:00

It will take you 40 minutes to watch all three parts, but it will be well worth your while if you want to understand how CCSVI may contribute to MS symptoms... and perhaps may be the initiating cause:

This hypothesis makes a lot of sense to me. It's good to have physicists and fluid dynamics scientists working on this problem. This is a complex disease... we need diverse teams of experts looking at this problem, not just drug company researchers.

Genetics 101 for MS

2011-08-17T18:47:00.001-03:00

Still confused by the "remarkable" study announced with great fanfare a few days ago, the one where the researchers said that MS is "definitely" an autoimmune disease and that their study "proves" that CCSVI has nothing to do with MS? Well, here is a short article by Joan and Marie that explains why these researchers are full of it, and how full of it they are: Genetics 101 article.

Does this disprove an autoimmune connection to MS? Of course not, but it sure does shine a different light on some of the most outrageous of the scientists' claims.

Hmmmm... I wonder who paid for their "research"... could it be... drug companies? I wonder how much it pays to be a shill for Big Pharma?

Don’t discount Zamboni, advocate says

2011-08-16T23:21:00.000-03:00

This is a good story, one worth reading, in the St. John’s Telegram: http://bit.ly/pnGMjr.

MedHelp Health Chat on living with MS: Today

2011-08-16T13:20:00.000-03:00

This evening Dr. Jonathan Howard from the NYU Multiple Sclerosis Center will be answering patients’ questions and providing tips for managing MS symptoms in a live conversation. I have never listened in on one of these and probably won`t have time to join this one, so perhaps someone can let me (and others) know how valuable it might be:

MedHelp Health Chat
Multiple Sclerosis: Understanding the Disease and Managing the Symptoms
Tuesday August 16, 2011 6:00-7:00pm (EST)

Can Myelin be Repaired?

2011-08-16T01:29:00.000-03:00

It would be an exciting development for MSers if this really pans out: http://exm.nr/oJUL6q.

TAMSI: Alberta makes a move

2011-08-15T14:55:00.000-03:00

This is not really new, but this is the first time I've seen the details of the Alberta study following up on MSers who have been “liberated”: https://tamsi.ca/survey/. It looks like it might be quite comprehensive and worthwhile if it`s done well... anybody know any Albertans who've done the survey and could comment on it?

Zamboni frustrated by unscientific scientists

2011-08-13T09:21:00.001-03:00

In a recent article in MedScape discussing the OPINION of Dr. Compston that new genes found in MS implicate the immune system only, and preclude a vascular connection, Medscape asks Dr. Zamboni for his opinion on this new research and the recently published negative review by Dr. Bagert: Facebook page.

Also from Dr. Zamboni - an older paper

2011-08-13T00:59:00.003-03:00

This is heavier reading in an older paper (that I hadn't seen before), but it shows some of their earlier thinking, and the conclusions are fairly understandable: http://phleb.rsmjournals.com/cgi/reprint/25/6/269.

Exciting research results from Dr. Zamboni

2011-08-13T00:51:00.004-03:00

Despite the problems with the English language and the fact that the group being studied was small, the results seem to demonstrate that CCSVI treatment is safe and has a significant effect on objective measures of MS progression: new Zamboni research results. Note that the actual paper referenced in that message is not properly linked... here is the proper link: http://www.ejves.com/article/S1078-5884%2811%2900201-2/abstract.

Study disputes Zamboni theory of multiple sclerosis

2011-08-11T10:11:00.001-03:00

This large study seems to show that the incidence of MS is highly correlated with genetic markers for autoimmune diseases, in their eyes throwing doubt on a vascular cause for MS initiation or symptoms: Globe and Mail article. However, the actual findings seem way too preliminary (and complicated) to say, as one of the researchers does, that this "proves" that MS is strictly an autoimmune disease.

And here is the discussion concerning the implications on TiMS: TiMS discussion.

Story in the Winnipeg Free Press

2011-08-10T00:10:00.000-03:00

Except for a few errors, this is well researched and certainly well written: Winnipeg Free Press article. It gives a fair overview of the CCSVI situation, but does it from a very personal viewpoint.

Letter to Senators and New Brunswick MPs

2011-08-07T15:09:00.001-03:00

This is the message I just sent to our politicians:

My name is Ted Robak. I live in New Brunswick where I was diagnosed with multiple sclerosis in 2004. My physical condition had started to deteriorate rapidly to the point where, in the summer of 2009, most of my thoughts were about how the things I was still (barely) doing were probably the last time I would be doing them. I was also resigned to the likelihood that I would soon have to stop working. Then, upon returning from what we thought would be our last overseas trip together, my wife and found that we had been inundated with messages from people suggesting we watch the W5 program on CCSVI and its treatment. After researching the theory, I decided to apply to be tested and treated for CCSVI in Poland, since there were no opportunities to even be tested in Canada at the time. I was tested and treated at the end of April 2010, where they used angioplasty on my right jugular and placed a stent over a faulty valve in my left jugular vein. I experienced the following improvements to my health as a result of that treatment:
Fatigue: Before treatment, I would have to nap as often as four times a day. I got tired just thinking about going to work or doing any kind of activity. Now all that has disappeared. I can work all day and rarely take a nap.
Balance: My deteriorating mobility was due to my left side weakness, foot-drop, and my lack of balance. While the other symptoms remain generally unchanged, my balance has improved dramatically, giving me significantly more mobility.
Bladder function: This has improved greatly to the point that I no longer have to take medication for it.
Strength: Though my left-side weakness (leg and hand) remains generally unchanged, that can be considered a good thing considering how quickly things were deteriorating before treatment. That I did not see dramatic improvement in this regard is hardly surprising, since CCSVI treatment is not likely to undo existing neurological damage.
Since my treatment 15 months ago, I have had two follow-up tests, in Barrie, Ontario (September, 2010) and then Bangor, Maine (June, 2011). In my last follow-up, it was seen that some of my blood-flow problems have returned, which is worrying since there is, as of yet, no treatment for CCSVI in Canada. I hope I don’t start losing my new-found stamina and other improvements that have hugely changed my ability to be productive and enjoy life. Since I was treated, my wife and I have stopped talking about all the things we’ll be doing for the last time, and I hope that we won’t be going back to a situation of relentlessly diminishing possibilities again.

All Canadians should have the opportunity to have their veins unobstructed, and their blood flowing freely. We shouldn’t have to go overseas for this.

Please support Senate Bill S-204. Clinical trials may not help me, but they should provide the information for future CCSVI sufferers. What will help me and tens of thousands of Canadians right now is to allow MS sufferers to have recognized blood-flow problems to be treated in Canada, not turned away simply because they are MS patients.

On vacation at our cottage

2011-08-07T01:10:00.001-03:00

Back from London (a great trip) and a couple of days in PEI, now we're finally at the cottage on the Baie de Chaleur (or Restigouche River, depending on which map you're looking at). In between chores (mowing a jungle of a lawn, painting the deck and building some steps for a dangerous slope, planning the rebuilding of our seawall), we've even had a chance to relax. Haven't been able to do much fiddling, though... after a day of work my left hand doesn't work all that well.

Fronting ghostwritten medical journal articles is fraud

2011-08-04T13:26:00.001-03:00

Two law professors at the University of Toronto say that academics who put their names on medical journal articles actually written by drug industry writers should be charged with fraud: http://www.news.utoronto.ca/social-sciences-business-law/charge-academics-fronting-ghostwritten-medical-journal-articles-say-u-of-t-.html. This is so obvious, you wonder why it even needs to be said.

Cochrane review of CCSVI research

2011-07-27T21:18:00.000-03:00

Folks, I have been asked to help in a Cochrane review of CCSVI research to date. Cochrane reviews are well respected and provide an opportunity to steer the medical community toward adopting new techniques quicker, if warranted, and to identify gaps in current research. I would like our CCSVI community to help by producing a bibliography of relevant research literature concerning CCSVI and its treatment. The people I'm working with probably have most of the important references we might supply, but this way we reduce the risks of gaps. Joan and Marie will help a lot, I hope, but I'm sure that there are others who can help, as well. Please send me a message and I'll e-mail you the draft objectives and initial bibliography. Info about Cochrane reviews can be found at www.Cochrane.org.

Still walking in London

2011-07-27T21:14:00.000-03:00

Taking lots of public transport, but still a lot of walking to and from stations and between platforms... a good thing about that is that my left foot swelling is way down.

Lots of walking in London

2011-07-25T18:45:00.000-03:00

Our daughter has been taking us around to see lots of the sights around London for the last few days... and giving my legs quite a workout! No blisters yet, though, so I guess I can't complain.

My results back from EMMC

2011-07-20T14:27:00.002-03:00

I just received my official "Preliminary Report" results back from the Eastern Maine Medical Centre:

FINDINGS: On the right, the right internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein was 1.79 cm/squared in the supine position and 0.10 cm/squared in the upright position. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was no evidence of reflux in the vertebral vein, both in the supine and in the upright positions. However, there was evidence of reflux in the internal jugular vein in the upright position but no evidence of reflux in the supine position.

On the left, the left internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein valve at the level of the mid-thyroid was 1.02 cm/squared in the supine position and 1.11 cm/squared in the upright positions. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was evidence of reflux in the internal jugular vein in the supine and in the upright-positions; however, the vertebral vein was competent both in the supine and in the upright positions.

IMPRESSION:
1. On the right, one out of four criteria met for chronic cerebral spinal venous insufficiency.
2. On the left, two out of four criteria met for chronic cerebral spinal venous insufficiency.

So, I still have some evidence of CCSVI... and I'm wondering what that means and what I should do now. Looks like my best source of info (for now) still might be TiMS, though they are supposed to send the images to Barrie, so I might eventually get some answers from Dr. McDonald, as well.

Off to England on Friday

2011-07-20T13:00:00.000-03:00

We travel to London on Friday to visit my daughter for a week. She has lots of activities planned for us, so I hope I can keep up, though, I am not as worried about it as I would have been if I hadn't been "liberated". This will definitely NOT be my last overseas trip.

MS Symptom Improvement Observed After CCSVI Treatment

2011-07-18T16:00:00.000-03:00

All, right, we're starting to get results from some of the bigger clinical studies: http://bit.ly/qNPlHP. While it isn't clear from this medical news report such important things as what the prevalence of stenosis was (i.e., from what size of group were these 125 people chosen), I hope the actual article makes such things clearer.

Progress From MS Societies’ Initial Studies on CCSVI-MS

2011-07-14T18:45:00.002-03:00

After reading these summaries, I'm feeling more confident that they are not just shams intended to delay the beginning of CCSVI treatment in Canada: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=5261. We need to keep vigilant (the MS societies have not been completely honest previously), but these research projects could be very helpful to MSers... I was skeptical, but would be SO happy to be proven wrong.

2nd Canadian dies after MS surgery

2011-07-09T01:00:00.000-03:00

The CBC story here: http://bit.ly/nP4tBX.

A second death after 13,000 or 14,000 or 15,000 treatments? My sincere condolences to the family. However, thousands of people have been helped by this treatment. They have all decided to take the risk in hopes of a better quality of life. If I had to make the decision again, or had to advise a family member in my same situation, my words would be: "Do it!"

CIHR Scientific Expert Working Group Meeting

2011-07-07T17:59:00.000-03:00

Here is a summary of the meeting that led the Feds to OK phase 1 and 2 clinical trials on the value and safety of CCSVI treatment of MS patients: http://www.cihr-irsc.gc.ca/e/43952.html. I have many questions about this, but the first of them is this: Why doesn't the "expert panel" still not contain any experts on CCSVI?

No 'magic bullet' for MS

2011-07-04T15:18:00.001-03:00

There was an opinion piece in today's Telegraph Journal (http://telegraphjournal.canadaeast.com/opinion/article/1420576) from a Dr. Colohan, a self-described "pain specialist with an interest in the balanced public reporting of scientific research". In the article he gives the impression that he feels that the CCSVI controversy is much ado about nothing, that there is no science behind it. In fact there were quite a few errors and misleading statements in the opinion piece, too many for me to respond to given the paper's 1000 character limit for comments. What I did say was:

I am also interested in the balanced public reporting of scientific research for both professional and personal reasons. Therefore, I would like to point out incorrect and/or misleading statements in Dr. Colohan's opinion piece. Firstly, he states that Zamboni's initial findings were not confirmed in 6 research publications, while neglecting to say these were small studies while much larger studies (such as the one of over 500 people in Buffalo, for example) found very high correlations between CCSVI and MS. Secondly, Dr. Colohan states that 30% of MSers treated for CCSVI have some improvement, making it the same as placebo effect. Where does the 30% come from? The only information available is from self-reported results online and from clinics, all of which report 66 to 80% of treated people had significant improvement. Can these be trusted as accurate? No, but I trust them more than numbers that apparently came from thin air. There's more, but I'm at my 1000 character limit.

Other things I could have mentioned:

There are many decades of science behind the theory of vascular theory of MS or MS symptom causation, but these were ignored by much of the medical community who had bought into the autoimmune theory, instead.
Many of the explanations for how CCSVI could impact (or even be the initial cause of MS) DO make good common and scientific sense. Certainly the idea that CCSVI exists and is significantly highly correlated with MS is pretty much gaining wide acceptance by medical researchers, so for the doctor to say that "CCSVI and 'liberation therapy,' in my studied opinion, are concepts which make very little scientific sense" makes you wonder both about his sense and how much he studied the subject.
The scientific method is being used by (most of) those who are researching the issue, I would hope, but for a lot of medical researchers this is all new: good clear definitions of what constitutes CCSVI and how to properly diagnose it are still being debated. Some of the negative research results came from researchers who were not vascular specialists, didn't know what to look for... and still got published in an astounding six weeks in a Neurology journal... hmmmmm.
There are several places he says things like "neurologists report that patients who have had this treatment and report subjective symptom improvement (they feel better in some manner) do not demonstrate improvement in their neurological function on physical examination", yet there are no indications who these neurologists are, where this was reported, the scientific basis for these reports, etc. For some one advocating "balanced, scientific reporting", he certainly doesn't appear to want those rules himself.

New information concerning Albany

2011-07-01T11:33:00.002-03:00

Here's an update on my earlier (September) posting concerning the clinic in Albany, New York (posted by lovelyrita to My MS Journey at July 1, 2011 11:18 AM):

You probably know this by now, but there are 2 doctors at this facility performing the CCSVI procedure; Dr. Gary Siskin and Dr. Ken Mandato. Also the address above is incorrect. The procedures are done at:
Capital Region Health Park
711 Troy-Schenectady Road
Latham, New York 12110

I had the procedure in May 2010 with Dr. Mandato and it is a terrific place. Wonderful, caring staff and I had a great result. No stents needed and no re-stenosis over a year later :-) My total cost was $5000.00 but I have heard that the prices have increased since then.

MS treatment trials face setback in Saskatchewan

2011-06-30T09:05:00.000-03:00

Good news yesterday, bad news today: CTV story.

MS therapy clinical trials to get federal OK

2011-06-29T16:47:00.000-03:00

Thanks to all those wonderful people who've gotten us to this point... together we DID make a difference: CBC story.

Senator Jane Cordy Tables CCSVI Bill S-204 in Senate

2011-06-28T10:44:00.000-03:00

Let's hope this gets some serious attention and debate: http://on.fb.me/kd6uvC.

Weekly Digest on CCSVI and MS

2011-06-27T09:12:00.000-03:00

A weekly news digest from the Canadian National CCSVI Society: http://paper.li/CCSVI_Society/1306484186 Check it out, sign up, stay current!

The Liberation Day Song

2011-06-26T00:05:00.001-03:00

This is what my wife and friends composed and sang to me at my Liberation Day Anniversary party. Some of the words are more inside jokes, but you can change them to suit your situation... enjoy!

Help the New Hope for MS Tour!

2011-06-25T00:18:00.000-03:00

Hey, if you or anyone you know is interested in promoting CCSVI research and treatment, please see the New Hope for MS web site and think about giving the tour a donation or helping out by organizing an event. There are still many places west of Toronto that need people to help organize presentations, so if you can lend a hand, please contact Deirdre FitzGerald at deirdref6@gmail.com or 705-431-1463.

My jugulars are (mostly) open

2011-06-24T23:59:00.000-03:00

I'm back from my ultrasound at the EMMC in Bangor. Chris Willis did the work on me - and it was a great experience. He was professional, thorough and very informative, explaining things to me in layman's terms so that I understood what he was doing and what the implications might be (from a purely technical perspective, and as far as anyone can tell in these early days of CCSVI science). I would recommend their service to any of my friends. I appear to have some reflux in both jugulars, but not much and in the stented jugular I think he felt it could be expected. I'll be getting the full report after the doctor reviews the scans so I'll let you know more at that time.

CBC story on CCSVI treatment

2011-06-21T10:04:00.000-03:00

Here is a story about the Liberals' call for CCSVI trials that includes an interview with Tim Donovan who is back on his New Hope for MS tour: http://bit.ly/mAvcxW

Wendy Smith treated for CCSVI, symptoms improve

2011-06-21T09:53:00.001-03:00

Wendy has been working with our organizing group for the New Hope for MS tour across Canada. See her story on a CBC newscast here (her story is between the 2:00 and 5:00 minute marks on the video).

Liberals Call for Clinical Trials for CCSVI and Multiple Sclerosis

2011-06-20T15:03:00.000-03:00

Well, the Liberals are still on our side: http://bit.ly/miewu0. Does the NDP have an official stance on this issue? Quite a few of their members have spoken out about it, but I can't find anything official on their web-site. In fact, since there is no "search" function on their web site, it's hard to find anything there.

Dr. Hubbard speaks to MS Society members in Toronto

2011-06-19T14:08:00.000-03:00

Though it may take a while for it to make a difference, it appears that meaningful dialogue is possible: http://on.fb.me/l1FDD4.

New Brunswick Multiple Sclerosis Assistance Program

2011-06-15T20:22:00.000-03:00

It won't help me or others who went abroad before April 1st of this year, but I'm sure that it will be appreciated by those who need it: http://www.gnb.ca/0162/programs/MS/index-e.asp.