Sunday, February 4, 2007

Something I Find Annoying And Concerning...

     In my personal quest over the past 4 years to find accurate and practical information about the medications used to treat Multiple Sclerosis, I have run across only a FEW sites and sources that I have found useful.  Most of the "googled" sites are either written by the drug manufacturers themselves or included in study data that is quite difficult to decipher unless you have a PhD in physics!  I have searched and searched for HONEST information about the ABC's/CRAB drugs (those nasty injectables), IVIg, Tysabri, and now Novantrone, only to discover there's really no GOOD site where patients THEMSELVES can go to document their personal experiences with these drugs.  I'd like to change that...

     I wish I had the knowledge and the where-with-all to establish a website for this purpose, but I don't...I haven't the faintest CLUE how websites are made, produced, or placed on the Internet (MDMHVONPA?!?  Computer geek that you are...).  I also understand there is liability with written words even on the Internet (yeah, they're lining up to sue me now!).  But wouldn't it be nice to have a place where MSers could go and read REAL experiences in a concise and practical manner without fear of condemnation for their experience or fear of being told "it's all in your head" when talking about the effects these potent drugs have on us? 

     I'm weary of surfing MS blogs for this information and trying to hunt and pick through sites to find a morsel of usable content.  So, what I'm proposing to "all y'all" MSers out there who do drive bys here on CHEESE is this:  I'd like to be able to document your honest experiences with any and all of the MS drugs in some sort of post that I could link over on the side of this webpage.  And to do that, I'll need your input, your thoughts, your writing, YOUR experience!

     What I am proposing is each of you either place your experiences in the comment section of CHEESE or, better yet, send me an email that you wouldn't mind seeing in a post here in your own words.  I will gladly accept responsibility for the disclaimer of "not everyone will experience the same effects", blahty blah! LOL  I'd like you to write about the good, the bad, and the ugly (of course leaving out expletives that AOL might "ban" me from using!) of your experiences with any of the drugs used to treat MS.  I'd like for it to be in YOUR OWN WORDS and your experience uncensored (except for the expletives!).

     If you feel so inclined to participate in my little science project, please answer the following questions as well in your writing:

1.  Which drug(s) you have taken, what you currently might be taking, and how long you've been on your current regimen.

2.  Any untoward side effects YOU'VE encountered...regardless if they are documented as a possible side effect of the drug(s).

3.  What you may have used or tried as a means of combating any side effects (like other medications, home remedies, diet, etc.)

4.  Whether you feel the drug(s) has been useful in controlling your MS symptoms and what those symptoms are/were and also your current diagnosis (RRMS, PPMS, SPMS, etc.)

     If enough of you MSers choose to participate, I will compile your information (and use your name or screen name with your permission only) into one hopefully LONG-ARSED post that can be linked to over on the side bar of CHEESE.  I look forward to hearing from you soon...

2 comments:

mdmhvonpa said...

"I haven't the faintest CLUE how websites are made, produced, or placed on the Internet"

Pixies and gnomes ... but I've said too much now, they may be watching!

mdmhvonpa said...

Oh, and to answer your question: A,B & C (no R or LDN) ... and currently clean for 5 years.  Horrible side effects for all 3 ranging from the typical site reaction/flu to extreme fatigue and total system failure.  Standard stuff.  Other than fever reducers and such, I used nothing but bed rest, and antihistamines to combat the side effects.  Then, I gave up on the drugs and went 'healthy'.  My RRMS slowed to a grind and my life has never been better ... since I got MS.

Enough 'Happy-Happy' there to kill a cow.