Think it's Weird? I do.

[sllowe]

Does anyone else think it's weird that once you are diagnosed w/MS that you get asked which med to choose to take?  They send us home w/all the gift basket med literature, etc.  Why should it be our decision?  Not that we don't appreciate having a say in it, I think it's wonderful to be included.  But, I just wonder why the Docs don't take a larger role in it.

I just find it weird, and I was wondering if there was more logic to it than what we know.  Is it just that like us, they don't know if it will work or not, so they leave it up to us?  What about those who are unable to read up on the choices and make an informed decision?  I mean afterall, once you read up on them, it's hard to actually understand exactly "what" is being modified in your body.  It's very very hard to wrap your head around these meds.  So, does anyone have any clues as to why the Docs don't suggest what they "think" would be good for you.  

Once I researched it all, I had to ask my Doc what one "he" would choose for me.  It was different than the one I was going to choose, and I went w/his choice.  

Anyone have any inside scoop, or theories as to why you think this might be?

SL

[Momzilla]

Hey!

I think this is so standar in the medical community today.  It used to be the doctor would not tell you much even about what was wrong with you, let alone give you any choices with reagrds to your own treatment.  She/he would pat you on the knee and write out a prescription and one for Valium, too, and tell you you'd feel better.

When I interview the breast cancer patients (subjects) who participate in the studies we are involved in at the office I work at, they share how overwhelmed they are by how much they have to decide about their course of treatment, because they are still in the fog of diagnosis and the decisions must be made quickly.  

Or, I'll answer the phone, and a 32 yr. old cancer patient will ask my opinion about whether I think she should have a prohylactic mastectomy, when she has cancer in just one breast.  I am not allowed to tell her.  Nor really guide her.  I am not a nurse or medical professional.  I direct her to her oncologist or breast surgeon, and she will say that her docs have completely left it up to her.  I tell her to ask them what they would advise their daughter/mother/sister to do.  

The medical community is leaving these decisions up to the patients now.  Like ess said, in a way, it's great.  Some feel confidence in their ability to research and find the treatment that is the perfect fit.  But some could use guidance.   Maybe, after the research has been done, and you have eliminated one or another drug, you could ask the doc which she/he would prescribe for a family member, say if she had problems with dperession, like Heather said.

Just my thoughts.

Zilla*

[Deb61]

At first I found that it was strange, too.  I even asked my neuro point blank which medicine does he think I should take and he hedged and never did tell me.  He still never said when I saw him in the office to make my choice of DMD!

What Heather said makes sense.  I think the doctor figures that you'll be more likely to adhere to a medince with potential side effects and needle punctures if you are in the decision making process.  I'm glad my doctor made me choose in the end (no pun intended)!

Deb

[Heather3418]

I was on Avonex many years ago and was on it for three years.  I didn't take anything for the next 3 1/2 years.  I am now on Copaxone.  I think this is one that I can stay on, but can't wait till they come out with the pill form of these drugs.  I am tired of feeling like a human pin cushion.

Heather

[essdipity]

Actually I liked it that I got to make the choice. I think my neuro was saying two things:  You are intelligent and can play a role in your own treatment modes, and--You know yourself best so can decide which side effects would be least troublesome. It's a given that there will be side effects, after all.

But anyway, this has worked out well for me.

ess

[sllowe]

Yes - Ma'am,

You always make sense.  I read a couple other threads where people were juggling the decisions w/the meds, like I was, and thought it was strange.  Wondering if there were more to it.

It's nice to know that some Drs do play a larger role in the decision process.  Not just giving the differences between them, and leaving it up to the patient.

Guess in the end, it's like you say, have to try one out that you feel suits you, then move on from there.  As you know, eventually, I will have to re-visit meds again, and a choice - I don't look forward to it though.  

Since you've been on both now, I'm sure I will be reaching out w/some questions.

Oh, I already have one -
What was the length for you inbetween Rebif and Copaxone?

Thanks,
SL

[Heather3418]

Both times I went on one of the DMD's I was not given a choice.  It's the ones that my Neuro's at the time, preferred for me.

I think you can make an informed decision after reading up on the side effects (the most common ones) not the dreaded list of all the little minor things that could happen, but the ones you, according to your own current health issues; may affect you.  Then make a choice from there.

Such as depression.  Are you prone to depression?  Then be cautious of the ones that cause or contribue to depression.  That kind of thing...  Am I making any sense?

Sometimes it has to be an experiment.  Start one, see how your body adjusts to it, then go from there....

I DO think it's good that your doctor gave you all the literature and let you read up on all of them, leaving the decision up to you, as to which you are most comfortable with.  Maybe you don't want to take a shot in the muscle once a week, maybe you don't wan to take a shot every day under the skin...depending on your lifestyle and how  it fits into it....

Best of luck in your decision.  It's hard to tell you as a veteran MS'er myself, which I would stay away from, or which ones I prefer.  That would be unfair to you.

Heather