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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