MS News

I never got a call for my monthly drug trial visit and blood work, even though I called and left a message.  This new care coordinator is terrible.  I got my notice for the monthly survey and completed it.  I'm doing my part; I wonder if I should contact my doctor to let him know about the terrible cc.

I read a LOT of MS news but don't always remember to pass it on.  Here's some super-interesting tidbits:

• Drug companies suck balls.  The FDA issued warning letters to Teva (Copaxone, one of the most popular drugs because the injection is subcutaneous)and Biogen (Avonex, one of the most popular interferon drugs because the injection into the muscle is "only" weekly) for making false claims about their drugs.  I took Avonex for several years and as far as I can tell, it didn't do shit for me, but it made me ill and gave me semi-permanent scarring on my legs.  The FDA letter said their claims are " misleading because they overstate the efficacy of Avonex, omit material information, and present unsubstantiated superiority claims for the drug. " For the amount of money we spend on MS drugs, it's mind-numbing to consider the implications if the efficacy claims are overstated--efficacy of about 30% barely seemed worth it to start with.  If the efficacy is even lower AND we could get our "trusted" doctors to stop pressuring us to take this crap, maybe the financial cost of MS could decrease and we could put the money to something more worthwhile, maybe something like a cure instead of a poison.
• A lifestyle study showed that moderate consumption of alcohol, wine, coffee, and fish on a regular basis is good for us with RRMS.   Patients with relapsing onset Multiple Sclerosis (MS) who consumed alcohol, wine, coffee and fish on a regular basis took four to seven years longer to reach the point where they needed a walking aid than people who never consumed them. However the study, published in the April issue of the European Journal of Neurology, did not observe the same patterns in patients with progressive onset MS. Since alcohol, wine (I'm not sure why these are separated), coffee, and fish oils are thought to improve blood flow, some feel this may be another link to the vascular theory behind CCSVI.  I think it is also interesting that there is a difference between RRMS and PPMS/SPMS as there is a theory these are actually different but related diseases.
• MS Awareness week was last week.  I'm going to buy a Tshirt but it's customizable and I can't decide what to put on the back.