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***

I hear you Dej and all and understand.

Being an old fart, who has had MS, since before DMDs, I have seen and had all the frustrations of having a "there is no cure" disease....and then a "oh, we have some meds now, but they don't seem to be for you" disease and now a, "sorry, you missed the boat" SPMS disease.

I dropped my, by the book, Neuro and just see my great PCP, who hugs me when he comes in the room, because he can't make my MS go away. He helps to keep me healthy, otherise and treats my MS sx, if I ask.

Like Dej, I'm not asking anyone to follow my path, as we all have our own path we must follow.

This would irritate me. I hate losing a doctor I like. But, that don't mean you have to tolerate what you don't want. I read in this that it's time to find a new doctor you like. It's an opportunity. I know it might be a royal pain, but in the lemonade out of lemons process, maybe you can find a doctor you like better. Maybe you can take all the agonizing you did and update it and see if there is a different path you want to follow. Then find a doctor you like that can help you pursue the path you want to follow. Many will not agree with my approach. But, I like self empowerment and to me that means picking the therapy and then finding the supporting doctor. Just my opinion. Good Luck, Ken

My choices are now down to

1. the "my way or the highway" guy. He is strict, and doesnt want to explain himself when you question him. His team DOES explain things, and is very helpful, but to sit in front of him is not.

2. the original dismissive guy who made it clear that while he can handle and MS patient, MS isnt his speciality, and he thinks I should lose more weight, get MUCH more active, and I get the feeling that he thinks I am whiney.

One thing that MUST be remembered is that I also have this glioma thing in my head. Simply pulling away, and stopping all medical contact shouldnt be allowed to be an option in my world. Medicating me till I start running out of injured body parts shouldnt be an option either.

Since I live not too far from another state, I may start looking over the border.

I LOVE my MS team. LOVE them! they have been tremendous in helping me, but with this guy leading the team, I dont feel I am going to be heard, nor will my voice be taken into consideration. I can always stand up and roar, and turn into an aggressive person on them, and demand my own way. I would prefer to be a team with my MD and not be treated like a child.

For now, I am just going to sit here. I am NOT taking my shots. I am waiting for all my blood values to return to normal before I make any decisions. I am in less pain, but still painful. I have started to eat more than jello now, and my local MD has been quite helpful.

Thanks for letting me whine. Have you ever just been so depleted by the whole process that you wanted to quit?

Sorry to hear about this Dej.

It's hard when your full medical team can't agree since you feel like pulling your hair out. I've lucked out so far that all my docs are familiar with MS and were on the same page - until the Tysabri fiasco. My PCP couldn't believe they transferred my case elsewhere just because I wouldn't take a med, and he understood my fears with taking it. He would've advised against it himself with all the wacky, rare reactions I get to meds.

I hope the break from the meds help quiet the issues you've been having.

Dej,
My husband is a renowned Squeaky Wheel; when he feels he needs to be heard, he complains. And if the person he's complaining to doesn't do anything, he asks for the next higher-up to complain to. He often gets what he wants.

Dej, this is YOUR body-the vehicle that gets you around in life. Not your neuro's body. If he is so autocratic that he doesn't give you voice in your treatment, then I would say a big BYE-BYE!!
Easy for me to say, since so far I'm satisfied with my neuro. But I've dumped a couple due to incompetence or feeling as if I was not being heard...
But really, you have been through the ringer and have felt so ill; don't you at least deserve to be heard in the decision process?

I hear you about how draining this whole disease process is. When I experience the pain, the exhaustion, and the feeling that I am just wasting the oxygen I'm breathing, I am often tempted to just quit. But those who love me won't let me..."Keep fighting" is what I hear, esp from my very ill older sister.
So I fight. And I hope you will, too. Cause we need you. You are smart, brave, funny and chock full of info and support.
We love ya, Dej!

That is right where I am now. That is why I haven't been posting here and not even lurking much. I am becoming bitter and angry and too tired to type it all out.

I spend my days trying to function enough to work and take care of my kids. I spend my spare time playing Farmville on FB just because everything else sucks.

Holly and Dej --

Sorry Holly..

dejibo,

My opinion is that the docs really don't know anything about this disease and I would go with what you feel is best for you.

My friend at the MS group I attend had been on several of the DM meds for several years and kept getting worse. Now that she stopped everything she is getting better and is happy she finally said,"NO" to the neuro.

These meds are supposed to help about 30/40 % of the people that take them, which is no better than placebo, so they may be worthless.

gmi