Sham procedure

While the the article itself (like many others lately) tends to focus on the non-findings of the small BNAC study, it's worthwhile going oin to the comments, especially those from Dr. Arata and Carol: NY Times Blog.

Lasts again?

My left leg and arm continue to deteriorate.  I've just come back from a wonderful visit to see friends and eat great food and see great sites in Thailand... but for how long will I be able to do things like that?  As it was, there were a lot of things I was unable to see and do, though with the help of my great friends and wife, I didn't feel as left out of things as I could have.  Now that I'm back, I'm back into my regime of swimming, physio, pilates, yoga, working out... all with the hope that I can slow down the effects of the (apparently) relentless deterioration.  *sigh*

Still struggling...

Nothing much new to report from my side... I continue to work out regularly (swimming 4 to 5 times a week, yoga once or twice a week, Pilates with instruction once a week plus practice at home 3 or 4 times a week, physio very few weeks with practice at home three  or four times a week, then usually a workout at the gym whenever I haven't done much of the other things on a particular day.  Nevertheless, my footdrop, spasm and general left-side weakness is still be getting worse - slowly.  It's kind of hard to do all this just for the sake of not getting worse as quickly, but that's life with MS, for many of us, in any case.

Hormones and MS

Here is new research that supports an older idea, that increasing hormone levels may promote remyelinization: http://www2.cnrs.fr/sites/en/fichier/cp_sclerose_english.pdf.

Given that hormone (or pseudo-hormone) therapy is probably much cheaper and less dangerous than the drugs out there, many or most of which are of questionable value, it would be wonderful if this were found to work in MSers, perhaps even those with SPMS and PPMS.

Survey of my readers

Wow!  It's been well over a month since my last posting... and according to the pageview statistics I still haven't lost all my readers!  Sorry for being so quiet, but besides enjoying the holidays (remember that we of Ukrainian ancestry get to enjoy TWO Christmases and TWO New Years in the space off three weeks!), I've been occupied with new physio activities and am busy with some volunteer activities.  With respect to physio, beside my usual (working out, swimming and yoga), I'm trying out Pilates (private lessons) to see if I can improve the strength of my left arm and leg - and so perhaps improve my mobility.

In any case, I have a couple of questions for my readers, one that was instigated by a friends question, and the other that came to mind because of my worries that an overseas trip I will be taking next month is going to aggravate my sciatica:

1. Has anyone had experience with Lyrica, especially for sciatic pain?  I have a prescription, but after reading about side effects I'm not sure I want to try it.
2. How many people have tried and/or are currently using marijuana for MS symptoms?  If so, what symptoms are you using it for, what form are you taking it, how effective is it (especially for pain)?

You can reply to my blog or e-mail me directly and I'll post any responses I receive as anonymous contributions, especially since we have a block-headed government that still continues to harass marijuana users.

Also, if you have any other pain mitigation techniques, I'd love to hear about them.  When I get some responses I'll also let you know my success with my two favorite methods: yoga and whiskey!

A unifying theory: MS, CCSVI, Vitamin D and EBV

An interesting journal article that aims at pulling together various research studies that die MS to CCSVI an other causes: http://www.sciencedirect.com/science/article/pii/S1568997212000845.  Thank you Dr. Arata for pointing this out.

Zivadinov testifying to the Canadian Senate

Here is an interesting (though long) presentation to the Canadian Senate by Zivadinov and the subsequent Q&A session: Zivadinov at Canadian Senate.  While I don't agree with him that people should only have CCSVI treatment as part of randomized trials (for people who are going downhill fast, you would be taking away one of the few hopes they have of returning some quality of life), and I still don't see good evidence for his arguments that MS may cause CCSVI, I think it is worthwhile to watch the entire video for the sake of getting a feel for current expert understanding of CCSVI.

Wheelchair Kamikaze

Here's another good (though tough to read) essay from Wheelchair Kamikaze on the darker side of dealing with the ugly disease that is MS: WK's essay.

Sure glad I didn't wait!

Just over three years ago I heard about CCSVI and its treatment.  After a couple weeks of fevered research, I decided that Zamboni's theory made a lot of sense, and that given the rapid deterioration in my MS symptoms, I should take the earliest possible opportunity to be tested and, if appropriate, treated for CCSVI.

I'm SO glad I didn't wait for the testing and treatment to be made available in Canada because, if I had, I'd STILL BE WAITING FOR THE RESEARCH TO BEGIN!  Geez, what a travesty!

Virus or Stenosis?

I'm off Baclofen again... it didn't seem to reduce my spasticity and I was starting to feel tired again.  Since that is a possible side effect of the drug, I thought that was the cause of my increased dizziness and fatigue.  However, I've been off Baclofen for almost two weeks now, and I've had some days of greatly reduced energy, seemingly tied to a pressure I feel in my head, behind my right eye.  Could it be increased stenosis of my right jugular, or some kind of low-grade virus that just won't let go?  Just when I figured it couldn't be a virus that could last so long without turning into anything more, tonight I'm starting to feel something in my chest.  Whoopee, I think I'm getting a cold!