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: 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):

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
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

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.


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


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



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

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]

Sunday, October 23, 2011

Dr. Bill Code

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 ( 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.

Saturday, October 15, 2011

Wheelchair Kamikaze's posting about progressive MS

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.

Thursday, October 13, 2011

Interesting stories and links

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

I've been remiss...

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.

Tuesday, October 4, 2011

More disease relationships?

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: I think you’ll be surprised at what you see and hear if you watch this film.
Take good care.