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!
Wednesday, December 28, 2011
Saturday, December 24, 2011
Christmas is almost here!
To all my readers, may you have a happy holiday, filled with love and leaving many precious memories - and not too many more pounds!
Saturday, December 17, 2011
Iron levels in the MS brain
More about brain iron levels and MS progression: CCSVI Locator copy of an article.
CCSVI -- A New Phrenology?
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?
Friday, December 16, 2011
A raffle for CCSVI treatment
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:
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.
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.comThank you very much for your help and support.
Sunday, December 11, 2011
CCSVI Alberta Challenges MP Collin Carrie
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
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.
Saturday, December 10, 2011
Kirsty Duncan - Second Reading
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!
Thursday, December 8, 2011
Wednesday, December 7, 2011
Going to California in March
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?
Monday, December 5, 2011
Register on these mailing lists
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:
If you have any other sites that you feel I should include in this list, please let me know.
- Ken Torbert's CCSVI news blog, the CCSVI Locator.
- The National CCSVI Society's Weekly News Digest.
If you have any other sites that you feel I should include in this list, please let me know.
Tuesday, November 29, 2011
My letter to my MP regarding Bill C-280
This is what I sent:
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.
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.
Abnormal Iron Content in MSers
More evidence backing up the CCSVI theory: http://www.ajnr.org/content/early/2011/11/24/ajnr.A2773.abstract
Thursday, November 24, 2011
Saturday, November 19, 2011
Hansard extract - Kirsty Duncan
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.
Friday, November 18, 2011
Thursday, November 17, 2011
MS Society of Canada
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.
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.
Thursday, November 3, 2011
No Cure?
This pretty well describes what I believe the research to date says about MS, MS symptoms and CCSVI treatment: Joan Beal's Facebook article.
Monday, October 31, 2011
My status after 18 months
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.
Tuesday, October 25, 2011
A CCSVI breakthrough?
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.
Monday, October 24, 2011
And still more MS research of interest
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):
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
More MS Articles of Interest Received Today
Here are a few more already:
1. KINKEL RP, Dontchev M, Kollman C, Skaramagas TT, et al.
Association Between Immediate Initiation of Intramuscular Interferon Beta-1a at the Time of a Clinically Isolated Syndrome and Long-term Outcomes: A 10-Year Follow-up of the Controlled High-Risk Avonex Multiple Sclerosis Prevention Study in Ongoing Neurological Surveillance.
Arch Neurol. 2011.
ABSTRACT available
2. KITLEY JL, Leite MI, Matthews LA, Palace J, et al.
Use of mitoxantrone in neuromyelitis optica.
Arch Neurol. 2011;68:1086.
3. HAWKES N.
NICE guidelines on multiple sclerosis are being ignored.
BMJ. 2011;343:d6525.
4. D'HOOGHE MB, Haentjens P, Nagels G, D'Hooghe T, et al.
Menarche, oral contraceptives, pregnancy and progression of disability in relapsing onset and progressive onset multiple sclerosis.
J Neurol. 2011.
ABSTRACT available
5. TRIANTAFYLLOU N, Lambrinoudaki I, Thoda P, Andreadou E, et al.
Lack of association between vitamin D levels and bone mineral density in patients with multiple sclerosis.
J Neurol Sci. 2011.
ABSTRACT available
6. BOSTROM I, Landtblom AM, Lauer K.
An ecological study of industry in a high-risk region of multiple sclerosis.
J Neurol Sci. 2011.
ABSTRACT available
7. KOCH-HENRIKSEN N, Sorensen PS.
Why does the north-south gradient of incidence of multiple sclerosis seem to have
disappeared on the Northern hemisphere?
J Neurol Sci. 2011.
ABSTRACT available
8. JARIUS S, Paul F, Franciotta D, Ruprecht K, et al.
Cerebrospinal fluid findings in aquaporin-4 antibody positive neuromyelitis
optica: results from 211 lumbar punctures.
J Neurol Sci. 2011;306.
ABSTRACT available
9. DA SILVA AM, Vilhena E, Lopes A, Santos E, et al.
Depression and anxiety in a Portuguese MS population: associations with physical
disability and severity of disease.
J Neurol Sci. 2011;306.
ABSTRACT available
10. BRUCK W, Wegner C.
Insight into the mechanism of laquinimod action.
J Neurol Sci. 2011;306.
ABSTRACT available
11. FUJIHARA K.
Neuromyelitis optica and astrocytic damage in its pathogenesis.
J Neurol Sci. 2011;306.
ABSTRACT available
12. MAGHZI AH, Etemadifar M, Heshmat-Ghahdarijani K, Nonahal S, et al.
Cesarean delivery may increase the risk of multiple sclerosis.
Mult Scler. 2011.
ABSTRACT available
13. KIERKEGAARD M, Einarsson U, Gottberg K, von Koch L, et al.
The relationship between walking, manual dexterity, cognition and
activity/participation in persons with multiple sclerosis.
Mult Scler. 2011.
ABSTRACT available
14. O'CONNOR P, Wolinsky JS, Confavreux C, Comi G, et al.
Randomized trial of oral teriflunomide for relapsing multiple sclerosis.
N Engl J Med. 2011;365:1293-303.
ABSTRACT available
15. PATY DW, Li DK.
Interferon beta-1b is effective in relapsing-remitting multiple-sclerosis: II.
MRI analysis results of a multicenter, randomized, double-blind,
placebo-controlled trial.
Neurology. 2011;77:1431.
MS Articles of Interest
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.
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.
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.
ABSTRACT available
4. FRANCHIGNONI F, Giordano A, Ferriero G.
On dimensionality of the DASH.
Mult Scler. 2011;17:891-2.
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.
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.
7. KIRA J.
Astrocytopathy in Balo's disease.
Mult Scler. 2011;17:771-9.
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.
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.
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.
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.
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.
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.
ABSTRACT available
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]
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]
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