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Old 04-07-2010, 05:09 PM
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Dejibo Dejibo is offline
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Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
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I agonized about which DMD to chose, and I researched the heckpie out of it. I did my homework. I interviewed the MDs and I chose carefully based on experience, attitude, candor, and the ability to communicate with me. Last year the carefully chosen MD went higher up the ladder, and his college now takes 99% of the cases that come thru the door, unless you see the nurse manager. The point is, I didnt walk in the door and say "fix me" I did walk in the door and asked for explainations, and guidance. I didnt want them to do all the work, but I didnt want a dismissive MD either.

I find the new guy is quite stern. my way or the highway kinda guy. He has an amazing reputation, and is tops in his field, but I want/NEED to talk about this! I dont need an MD to sit me down like a child and say "take your medicine!"

Now the whole team is split in half. 1/2 feel that I have exhausted this whole Copaxone thing, and should be removed from it. enough is enough. The other half is upset that I would chose NO DMD should I stop Copaxone. OMG you cant go bareback thru the world of MS! so, If I will chose NO meds, then its better to keep me on a bad one? They have admitted that way way back in the literature, there is evidence that Copaxone CAN cause/exacerbate/inflame pancreatitis. it was rumored that it was in "social drinkers" I NEVER drink. NEVER! ok, maybe a sip to toast a wedding, but its a tiny sip, and then the glass goes back. I come from a long line of folks with issues, so I refuse to get started. and...IF, lets say IF I was a social drinker, does that mean they would still blame ME?! For a few days I was grilled about my "real" alcohol usage. "dont fudge now" and I got ticked off, because I have been so vigilant all of my life to NOT chose that road, only to have MY team acting suspicious! My PCP got involved and set them on the straight and narrow.

I am so torn. On one hand, I have my wonderful DH listening to well educated, highly respected folks tell him that his wife NEEDS to keep taking this med, even if its making her quite ill. Then he has his sick, and getting sicker wife saying "enough!"

I WANT to fight this stupid disease, but do I have to get killed to do it?

Im so frustrated!

**edit*** please know this is MY rant, about MY personal experience, and I am NOT reccomending or advising anyone else on what to chose for their treatments. There are some good meds out there, and CRAB and T have gone far and wide in the world of MS to help, when we used to be shunned. I am thankful for the choices, even if they are hard. ***end of rant***
__________________
RRMS 3/26/07
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Betaseron 5/18/07
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Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
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