Monday, April 16, 2012

Bits and Pieces: a Smorgasbord of MS Info

A photograph of part of page 65, Woman's Home ...
A photograph of part of page 65, Woman's Home Companion, August, 1921, to get the 1921 Underwood logo (Photo credit: Wikipedia)

(To those who receive these posts via e-mail, this post contains several videos, which can only be viewed on the Wheelchair Kamikaze website…)

Well, how often do you get to see the word smorgasbord in print these days? Seems when I was a kid, back in the 70s, you heard the word smorgasbord a lot more. But then again, maybe it was just my family, although I don't know why a working-class Jewish family in Queens would use the word smorgasbord all that much. So, I'll go back to my original premise and suppose that smorgasbord was used in everyday conversation more back in the decade of leisure suits and disco balls, neither of which are seen much these days, either.

Actually, there was a famous commercial back then for Underwood Deviled Ham that featured a child actor who looked like a living Cabbage Patch kid, Mason Reese (click here), saying that the stuff tasted like a "borgasmord", so that might explain my associating the 70s with smorgasbords. On a side note, I once saw a teenage Mason Reese in the Museum of Natural History, and thought he'd have made a better display than patron.

Anyway, for those unfamiliar with the word, a smorgasbord is nothing more than a buffet, Swedish style. I'm not a big fan of buffets, they seem somehow unsanitary and besides, I like being waited on. And now that I'm stuck in a wheelchair and have only one working arm and hand, doing the buffet thing would probably be all kinds of difficult, so I guess I no longer need to be concerned about buffets at all. See, every cloud has a silver lining.

Okay, enough mindless prattle, here's this month's buffet of MS and disability related info, so take what you will and try not to sneeze on the rest, as other people will be reading it after you.

♦ Starting out on the ever popular CCSVI front, several studies presented at this year's annual Society of Interventional Radiology (SIR) conference demonstrated that CCSVI treatment appears to positively benefit a cohort of MS patients (click here). Like almost all studies of this type conducted thus far, these studies were done retrospectively, using patient reported outcomes, which are generally regarded as less accurate than more strict scientific research methodology. In any event, the reports generally fall in line with previously reported data, finding that the symptoms most likely to be beneficially impacted were "quality-of-life issues" such as fatigue, cognitive function, and heat sensitivity. While these tidbits are encouraging, there are more rigorous treatment trials underway, so hopefully we'll have some robust data to chew on sooner rather than later.

On the negative side, a study on mice (click here) who had their jugular veins ligated (read "snipped") found that they did not develop any nervous system dysfunction as a result of the damage to their jugulars. As mice don't ever really develop MS (the most widely used mouse model of MS isn't MS at all, but rather is an allergic reaction induced by researchers), I'm not sure how much weight to put behind these findings. I believe similar research is being done on marmosets, which kind of sucks because marmosets are really cute, but the results of marmoset research would be much more convincing.

The lead singer of the Divinyls, Christina Amphlett, has MS, and recently had CCSVI treatment (click here for video). She says that the treatment definitely benefited her, and I'm sure all of you who enjoyed her signature tune "I Touch Myself" back in the 90s will join me in wishing her well. Now, stop that or you'll go blind…

♦ Turning now to the wide world of MS drugs, it seems that the new oral drug Gilenya has taken it on the chin lately. The drug is now under review in several countries because of safety issues (click here), after a number of deaths due to cardiovascular side effects were suspected. Additionally, a patient on the drug recently developed PML (click here), although that patient had previously been on Tysabri, which somewhat clouds the picture. Since Gilenya is the first oral MS drug, its release was generally greeted warmly in the MS community, but the mechanism of the drug would appear to be somewhat troublesome. Gilenya traps T cells within the lymphatic system, thereby keeping them from patrolling anywhere in the body, which one would assume might have negative repercussions on the body's ability to fight infections and other maladies. As usual, it's a complicated picture, as Gilenya may have neuroprotective properties (click here), and such properties have long been one of the holy grails of MS research. Neuroprotection good, patient deaths bad.

In other drug news, a recent study provides evidence that the CRAB drugs don't do anything to slow MS disease progression, even though they do reduce MS relapses and white matter lesions (click here). The study spanned 10 years and looked at 262 patients. Another study showed that cannaboids (the good stuff in marijuana) inhibited disease progression in mice (click here), but, as I stated earlier, the mouse model of MS is really pretty terrible. Still, the case for medical marijuana only seems to be getting stronger, so smoke 'em if you got 'em…

♦ The Multiple Sclerosis Association of America (MSAA) does some terrific work, and has programs designed to help MS patients in financial need acquire safety and mobility equipment at little or no charge (click here). They have a similar program involving the distribution of cooling equipment (click here), which can be a godsend during the hot summer months for those of us bedeviled by heat sensitivity. If you are a US citizen struggling financially during these tough economic times, please don't be shy about taking advantage of these truly wonderful programs.

♦ Movement on Wheels (click here) is a social networking site designed specifically for wheelchair users. The site is very new, and doesn't yet have many members, but I think the idea is a great one and I wish Movement on Wheels much success. If you are a wheelchair or scooter user, I'd encourage you to check out the site and help it become a thriving community.

♦ For those interested in learning about buying wheelchair accessible vans, this site has a lot of valuable information (click here). I'm not endorsing the company that runs the site, but they have put together an impressive website chock-full of really good info, and knowledge is power.

♦ A company in Italy, Genny Mobility (click here), is marketing a wheelchair made from converted Segways. The chairs are not yet available in the US, and the website is strictly an Italian, but check out the videos to see just how cool this little beast is. Looks like riding around in one would be a hell of a lot of fun, and I appreciate the con mucho gusto attitude that the inventor/marketer displays in the videos. Here's a video of the inventor riding around with his very adorable dog, and please forgive me for subjecting you to "Who Let the Dogs Out", a tune that the world could have very easily lived without:



♦ In my never-ending quest to shine a spotlight on assholes, here are a couple of pieces about jackasses ripping off the disabled. The first (click here) involves a chap in England who seems to specialize in robbing the vulnerable, and the second (click here) details the theft of computers from a Georgia office of the NMSS. To the miscreants involved in these incidents, I wish a pox on you and all your ancestors.

Just to make up for the "Who Let the Dogs Out" thing up above, I'll leave you with a much more pleasurable listening experience. Although I don't understand a word of French (okay, maybe I understand a few words) I listen to a lot of French music. I got started on Jacques Brel (a Belgian, actually) a few years ago, and since then a wide variety of chanteurs and chanteuses have been finding their way into my ear holes. Here's one of my more recent discoveries, Emily Loizeau. The song even has a bit of English in it, expressing a sentiment I think we can all identify with:




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25 comments:

  1. Great post Marc! Interesting to read the CRAB study as I am in the middle of transitioning to something stronger after only 2 years of Copaxone! Best, Christie

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    1. Thanks for your comment, best of luck with your new treatment. Keep in mind that there are some studies that seem to indicate that the CRAB drugs do have some influence on progression, though it seems to me that the evidence is weak.

      To me the bottom line is that tinkering with the immune system simply does not address whatever is the underlying cause of an immune system gone awry. We are treating symptoms, not the disease itself, albeit in sophisticated ways. For now, though, it's the best we can do (other than the alternative therapies that are out there).

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  2. Smorgasbord! The word makes me laugh. Years ago, my partner and I went to Scandinavia. The breakfast smorgasbord at the hotel where we stayed always had a basket full of fish paste. Your references to deviled ham and smorgasbords reminded me of fish paste.

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    1. I don't know, fish paste after toothpaste doesn't sound too good to me. Maybe if they put fluoride into the fish paste, you could kill two birds with one stone.

      Always wanted to visit Scandinavia…

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  3. Thank you again for the info. Am I not friggin surprised about the CRAB drugs? I am currently on GILENYA (3 months thusfar) but will be stopping it after 1 yr just to keep my doc & husband happy. Been on ALL the "drugs" out there for MS with NO BENEFIT WHATSOEVER. I never had relapses to begin with, just a steady decline; I just wanted something to slow down the progression...well that didn't happen with all those drugs. Just the deniro's spent is what I got. What a waste of time (11 yrs) & money. The only thing that sounds wothwhile is the cannabis; I've tried that again after a 34 yr hiatus, but that's some strong sh@t out there now..I just can't tolerate it now, much to my dismay!KIM

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    1. I'm with you in the "none of the drugs has worked for me" club. Unfortunately, those of us who start out with progressive disease don't have any real options, but the Neuros, rather than feel helpless, try out all the drugs that are effective on those with RRMS. The drug companies don't develop drugs for progressive disease because the trials measuring outcomes would take too long, since progression is a difficult metric to measure. So we get drug after drug that reduces relapses and enhancing lesions, when in fact it is the progression of the disease that really must be stopped.

      I'm also with you on your observation that the cannabis that is out there now is MUCH stronger than the stuff we played with when I was a kid. One puff and I'm ossified.

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  4. Kim, on the cannabis, I feel its best ingested in the form of oil or cannabutter and not smoked for many reasons. First you have some control over how much you are affected and second because its processed and distributed throughout the body in a more beneficial way. Also, you build up a tolerance. It is very good for circulation and spasicity (sp?) and is found to have abundant neuro protective properties.

    Recreationally, I don't mind the buzz if smoked, but for medicinal purposes, the real benefits are in ingestion so you don't "have" to get high to use it for medicine. Some say juicing it is best and has no psychoreactive affects at all as its not heated.

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    1. Pray tell, how do you make the oil or butter? I'm sure I can find the info on the net, so I'll have to do some digging. I sure wish Sativex was available in the US…

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  5. "See, every cloud has a silver lining. " Yep.

    Re: CRAB drugs...I stopped the Gosh Awful Copaxone shots about a year ago. I didn't/don't tell anyone, tho, it upsets people (especially my doctor). It did NO good and it freakin' hurts. It made no difference stopping. And re: the cannabis (which is illegal here in Ohio, sad to say)...buy a coffee grinder, grind it up, use it in chocolate chip cookie mix. Best way. DON'T smoke it. Better than cigarettes, but still not good for your lungs. I'd love to see if it would help the spascity in my leg. Stupid law.

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    1. SUE & JUDY....Thanks for the info....ratio for cookies or juicing? I honestly never thought abt "cooking" with it! KIM

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    2. Yes, thanks for the info. Some "medicinal" chocolate chip cookies sound good…

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  6. Have you seen the TEK Robotic Mobilization Device yet? It's pretty incredible: http://www.youtube.com/watch?v=_gb5poTdUMg

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    1. Yes, that is incredible. Thanks for the link.

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  7. Oh, yeah, I remember Mason Reece and "borgasmord". We're getting old...

    I went to that Movement on Wheels site, but it looks like an account is required to access anything - I usually don't sign up for anything I can't at least sample somehow.

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    1. Yes, I think you do need a password to get inside "Movement on Wheels". As I said in the post, so far the community is quite small, but there isn't anything on the inside that's too intrusive or needs to be shied away from. It's a fairly basic social networking site.

      We are not getting old, although it does seem like everybody else is getting younger. Since when did they allow children to become policemen, teachers, and doctors?

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  8. Ah, yes, the French songbird went a long way towards making up for "Who Let The Dogs Out," so you are almost forgiven....

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    1. Thank you for your forgiveness. "Who Let the Dogs Out" is a lot to be forgiven for.

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  9. Thanks so much for this post. Best of luck to you.

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  10. Hello kamikaze
    with respect to the study of CCSVI in mice with jugular ligation, you should read the entire article to see that the rats had a slowing of the cerebral blood circulation. However, the study only lasted 4 months and the same Zamboni said that time is insufficient to develop a brain injury. the title of the article is incorrect, because the jugular ligation produced hemodynamic changes in the brain of mice.
    thanks for your work. regards from Spain.

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    1. Thanks for commenting all the way from Spain. I didn't have access to the entire article, and only read the abstract. It is interesting that the rats displayed reduced cerebral blood flow, but I wonder about the time that would be needed for the rodents to start displaying CNS symptoms. I would imagine that their time spent would be somewhat compressed, but that's only an assumption.

      Of course, there have been human beings that have had jugular veins entirely removed, to no apparent ill effect. This area screams for more research, as so little is actually known about the effects of impaired venous blood flow on the CNS. It does appear that there is a correlation between MS and impaired veins, but is it cause, effect, or comorbidity? Lots still to be learned…

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    2. http://www.scielo.org.ve/scielo.php?pid=S0367-47622006000400006&script=sci_arttext

      in this link you can see the effect of jugular elimination. nerve injury is possible, and other symptoms as diplopia. note that to develop multiple sclerosis complete, you must have a specific genetic and specific infection still unknown.

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    3. Thanks for that link, of course I could only read the English summary, but the findings seem compelling, certainly worthy of a lot more research.

      I'm in complete agreement with you that genetics and infectious agents play a role in the development of full-blown MS. Quite likely, endogenous retroviruses resident in the human genome play a role. Another area that begs for intense research…

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  11. Hi,

    They forget to say in the "promotion" for Gylenia

    "Even though 8% of patients taking the recommended dose had laboratory evidence of liver damage, routine liver testing is not currently recommended"

    "The drug caused birth defects in standard animal screening studies, and both normal and abnormal babies have been born to women exposed to fingolimod during pregnancy"


    http://www.ismp.org/QuarterWatch/pdfs/2011Q2.pdf

    $$$...

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    1. Yes, there are many questions swirling around Gilenya. It would be great if they could isolate the compounds related to neuroprotection and discard the rest, if indeed the drug does have neuroprotective properties.

      I'm actually surprised at how problematic Gilenya is, since it's based on an ancient Chinese herbal remedy, cordyceps, that has been used medicinally for thousands of years. But then again, many herbal remedies are extremely potent.

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