Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


MS NEWS: MS Drug's Epic Journey From Folklore to Lab

You can read my ramblings and get a giggle or 27, or you can be a lame ass and just click on the post title above to read the entire article. Also, if your vision sucks like mine or you're a lazy m.f. and you just want to look at the
interactive graphic timeline, which, like THIS BLOG POST, you can share the love on Facebook, Twitter, and many of your social networking sites.
But be warned, if you take this route, I'll hunt you down and find a way to make all those stupid people that think neurological disorders are contagious correct.

So, carry on. And en


According to an article by Peter Landers in The Wall Street Journal,

" research into ancient Chinese fungus that propagates inside insects yields potential relief for multiple sclerosis."

Many of us may already be gimps (aka raspberry ripples - love this newly "learnt" British Slang - so tasty!) , we may be comprised of plasma and proteins of 10s of 1000s of strangers, and soon, we may be bug guts too.

As a professional TM/MS/RSD-er, I be well-school [sic(k)] in the cross- over of side effects, disabilities, and treatments.

For example, the IVIg that I've been receiving regularly (up to to 5 days every other week) to treat, originally, my Transverse Myelitis (TM), also is used to treat many Multiple Sclerosis (MS) patients, AND NOW has been found to provide relief to Chronic Regional Pain (CRPS aka RSD) patients. Even though IVIg's become holy grail of fixed trifectas, many insurance companies, including the profanely corrupt AETNA and some Blue Cross/Blue Shield's (to name just two super-sized crooked crook companies), REFUSE to PROVIDE COVERAGE for this pertinent treatment, even when there are no other options.

I've witnessed it too - all of it.

After receiving IVIg for the first time, a dear friend with Stage 4 RSD who has gone through 2 Ketamine Comas (I receive an Americanized watered-down autocratic FDA-version of this treatment) in Germany only to receive short-term remissions, gained an 80% relief in pain, and in RSD percentages that's like erasing 10 natural child-births from your body at once. And of course, her BC/BS refuses to cover home infusion of IVIg, so she must travel 2 hours to receive it in-patient - totally unnecessary and totally fiscally irresponsible and wasteful.

Surprise, surprise.

If all entrepreneurs thought like insurance companies, we'd live in an ugly, ugly world my friends.

OK, back to the bug.

The article validates much of what Chinese medicine and Complimentary Alternative Medicine (CAM) has to offer:

For centuries Chinese medicine has seen restorative properties in an Asian fungus that invades and destroys insects. Now a drug drawing on that age-old lore is poised to become an important new treatment for multiple sclerosis.

A Food and Drug Administration panel unanimously recommended this month that the drug called fingolimod be approved as the first oral medicine for MS, an often-debilitating disease in which the body's own immune system attacks a fatty substance protecting nerve fibers. The drug, assuming it gets final FDA approval, would significantly expand the treatment options for the hundreds of thousands of Americans with MS.

Nature was the first source of medicines to treat human disease and remains an important one. The Japanese scientists who discovered fingolimod added their names to a list that goes back to the European chemists who derived aspirin from a substance in willow bark and Alexander Fleming, who found that a fungus produced a bacteria-killing substance called penicillin.

We'll probably have to go to Canada or Mexico to get access to this crunchy, winged medical miracle in our lifetime (OK, I may be exaggerating a 'bout in the next decade), but it may be worth the trip. And boy, do I need a vacation. Mexico would be perfect if heat weren't so debilitating for us MS/TMers. Quebec would be gorgeous too, but not in the winter for us RSD-ers. So plan your trips accordingly, my friends.

Or maybe we could just accidentally find it dipped in chocolate and wrapped in plastic wrap on a styrofoam plate at our local Asian grocery???

Either way, let's get buggy...

(of course, I'd have to try to find an appropriate personifying video...this one's a stretch, but it was this or something that would be rascist coming from a white, jew, atheist, socialist/capitalist, rasperberry ripple. PS they use the F-word once and with perfect timing and pitch.)

Neuro Detour Presents:

Buggy Saints Row: The Musical

1 comment:

  1. Your way of expressing thoughts through words is excellent. Great blog, enjoyed reading it. Keep up the good work! Greetings.


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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


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