Bad news:  They kicked me out of the Fampridine study I’ve been in since November 2007


Good news: They kicked me out of the Fampridine study I’ve been in since November 2007


The Higher up office boys at “Acorda Therapeutic’s” didn’t think the “Stem Cell Study” and thier Fampridine study was a good mix.  Muddy results.  I understand that.

I need to start taking more of the drug that they were giving me anyway. 

Come to find out….a compounding pharmacy can make me the same medication.  All-though… will not be FDA approved therefore insurance will not cover it.  I’ve been told that the drug is not that expensive.  And now the doctor can prescribe more for me. I’d like to work w/ 30 – 40 mg/day instead of the 20mg/day that the study allows.  Other MS’ers I know take that much and more w/out complcations.  It would help my walking a little bit.


The dose that I was taking for the study is like taking one aspirin for a headache.  After a while……..The one aspirin is not going to do much for your headache.  You may want to take two…………

………no wait………you can’t do that……..the aspirin is a study medication……..and the researchers won’t do that for you. 

Now you get the idea.


My results we’re starting to flat line in thier protocol anyway.  It was easy for them to let me go.


Although, participating in medication research is not all bad.  If you do your homework about the med,…..and evaluate the risk carefully……..  you will never get more attention from a doctor than if you are in a study.  It was actually pretty educational.  And now the clinic knows allot more about me. 

 And maybe the next time I call, it won’t be:  “Todd, can I put you on hold while I grab your file?”


But the flip side is……….You are their human “lab rat”.  Their “cash cow” so to speak.


Makes you wonder why they would even see regular patience’s at all. (human lab rats are probably not readily available)  

I guarantee that your insurance companies cut rate for their time with you at your regular checkup doesn’t pay nearly as well as “Big pharma” research time.


Makes you wonder bout that three way pie again.

“Big phama”



Be Well