Color me Shocked!!! Not!!!

[Headswimin]

Today I read an article in "Neurology Now" magazine Aug/Sept page 34 titled "Who else is paying your doctor?" And I learned some most upsetting facts about our wonderful Neuros and their fellow coworkers. Some of our doctors that are supposed to be treating us to the best of their abilities are selling us out to make a few extra dollars at the expense of our health and well being. Some of these doctors are taking kick backs from the big Pharm companies just for getting us to take certain drugs. The article points out that Mereck Serona agreed to pay $44.3 million to settle allegations that it illegally promoted the MS drug Rebif between 2002 and 2009 using inducements that included sending doctors to various training meetings and conferences at upscale resorts, promotional speaking engagements, advisory and consultant meetings, and independent medical and educational grants, according to the department of justice.
Now I ask you this...
I can see how our doctors would need more training to keep up with changes in MS treatments and all but even if thats the only reason for the kick backs I don't want money and trips to decide how I'm going to be treated when I walk into my Neuro's office. Do you?

My last Neuro was all good with me not wanting to take ANY MS treatment drugs when I walked into his office for the first time but by the third visit he was getting quite pushy about me trying a "New" drug that was on the market. His selling fact about the drug was "Its and oral drug. No more needles." Appearantly he wasn't listening when I said "Rebif made things worse for me and I wasn't going to try anything else." Well I let him think I was thinking about it because I figured I "Needed" to have a Neuro. And when push came to shove and I finally said I wasn't going to be trying his "New" drug he got visibly upset and I was given the "I think you need to seek a second oppinion." and that was my last visit with that Neuro. Now I can't help but think he had a stake in me taking that "New" drug. Would I have helped to line his pockets or send him and his wife on a "Training" trip at a nice resort if I had taken his nice new needle free drug?

Ever since I was told I didn't have the time to try Copaxone because it would take too much time to help me and I needed to start Tysabri right away or "You won't be walking in 6 months". Well that was 2 years ago and I'm still walking and I DIDN'T start Tysabri or any other treatment. I'm not saying all Neuros are bad but I think I'll be looking at them all a little differently now. And it won't just be my Neuros. It'll be all my doctors. I have been to 2 neuros in the 3 years since I was Dx'd and they both have taught me not to trust my doctors. I hope I was just unlucky and that maybe my New Neuro will be different. But if he isn't and I get the same Scare/ Bully treatment he will be my last. I have enough to worry about with out having to worry about this too.

If you get a chance to read this article please take the time to read it. It talks about a possible future plan to make it so that our doctors will have to disclose this kind of info to us and that some states already have made it law that they do.

I'm sorry about my long winded rant and I'm not running for office and some of you have probably read this and just shook your head at it thinking "this guy is paranoid." but I just believe maybe we need to ask more questions to our doctors who we should be able to trust.

Well.... Maybe I am just being paranoid.
And maybe its just me who needs to ask more questions when I'm in their office.

[Camsue]

Hello Headswimin

welcome to the world of business....pharmaceuticals are big business and yes some companies add incentives for the physician to use their products..

Hopefully your Neurologist was trying to get you on a medication to halt the advancement of this MonSter. You need to do your research and decide which med will fit your lifestyle.

I prefer not to read these kind of articles, they produce unnecessary stress in our lives and we have enough already. I basically understand the system I trust that my Neurologist is focusing on me and not just a 'kickback', and that I am making the final decision.

Take care!

[Headswimin]

Typing while Tired...

I should learn to keep my views to myself when I'm over tired.

Yeah I agree with you that maybe somethings are better left unread including this thread that I started.

Sorry everyone.. I'll try to keep my activity to reading on here after 11 pm..

[MarkLavelle]

... some of you have probably read this and just shook your head at it thinking "this guy is paranoid." but I just believe maybe we need to ask more questions to our doctors who we should be able to trust.

Well.... Maybe I am just being paranoid.
And maybe its just me who needs to ask more questions when I'm in their office.

No, I didn't think 'paranoid.' But unfortunately, marketing is an unavoidable component of modern capitalism, and the US medical system is the most capitalist in the world. So I figure it's up to us consumers to pay attention to the difference between marketing and straight info. Life just isn't as simple as it used to be, so we all need to keep out thinking caps on...

Asking more questions is always a good idea. If a neuro always pushes the same DMD, you should ask for all their reasons for recommending it, including whether they've taken any perks or speaking gigs from that company. I find speaking gigs more acceptable: the educational aspect makes me tend to give docs the benefit of the doubt. I would consider "convenience" arguments to be pure marketing - only I know what is convenient for me. I'd also be suspicious of neglecting to balance side effects against urgency and potential benefits...

[Cat Mom]

I should learn to keep my views to myself when I'm over tired.

Yeah I agree with you that maybe somethings are better left unread including this thread that I started.

Sorry everyone.. I'll try to keep my activity to reading on here after 11 pm..

Please don't keep your views to yourself nor keep your activity to reading on here after 11 pm!!!

Personally speaking, it's these different views that make this forum as great as it is, as well as the info that's shared. We all have the choice to read, or not read, a post. I find all this stuff very interesting... sometimes frightening, but still a good read. Just my humble opinion.
Jen

[JerryD]

Headswimin,
You are not paranoid in your thinking. I have been on these so-called 'medical certification' trips to Vail and Bermuda, etc. In my previous profession, I worked along side pharmaceutical sales team to 'educate' the medical practitioners on the pharma's products. You don't need to worry about coming off as paranoid. Just point out the facts, as you see them and let the chips fall where they may.

[BigA]

I think we can never be sure and doctors can never be sure how much we're influenced by lunches and other items. If that sort of thing didn't work, comanies woudn't give out swag at conventions. Somehow, a little gift goes a long way with humans.

And don't forget - unless you have an older Neurologist, he or she may not feel very useful if if they're not writing you a prescription for one of the first line drugs.

[isamadjul]

Headswimin I like ur mind!!!

When I went to my Neuro the first time I jumped when she said jump...onto Beta I went. I didn't even make it a yr before I started to have a reaction and was told at ever visit that I need to 'get over my fear of needles'! HAHA I don't have a fear of neddles...well I might now So I had to do the wrong thing but was left without a choice and took myself off of it. When you shots become so painful you start screaming from the med going into your body and another 15-20min after with tears and crying. Its time to say something isn't right. Now after she found out this happened and I got 'talked to' She wanted me to see another Neuro to try G...since its a pill.

Lets jump to this Neuro. Liked him also but after feeling like crap on Beta and even him saying 'yep it was a reaction and not normal' I didn't care if it was a pill or not I wasn't going to just jump this time. I thought about it for months...ended up bowing to pressure from my hubby and family and did it. Neuro ended up taking me off it after only a few months. (While the deaths where being looked into) I felt better off the drug then on the drug so when he called to put me back on it I said thanks but NOPE.

So back to old Neuro I went who wanted me to do TY...I'm JCV postive with 4 younger kids and a husband. This drug isn't for me!!! BUT NOOOO she won't listen and thinks UofM will change my mind...guess where I'm going tomorrow. I'm only going though so I can say I looked, I did listen and I DECIDED FOR ME!

Everytime I've come off a drug I end up with more lesions. When I came off of G this last time I ended up with 13 new lesions in my brain with one of them 2cm in size...to add to the ones already there. On the brightside I ony had 1 new one add to my back Those I've been told are to many to count and I have the problems to prove it....So why I ask should I go on TY to have to go off it in a yr or 2? Is it to see how many more I can get when I go off or is it for a vaca for the Neuro or free lunch for the wk? I hope a vaca...I hope I'm worth that a least! LOL

isamadjul
(allyson)

[Headswimin]

When I went to my Neuro the first time I jumped when she said jump...onto Beta I went. I didn't even make it a yr before I started to have a reaction and was told at ever visit that I need to 'get over my fear of needles'! HAHA I don't have a fear of neddles...well I might now So I had to do the wrong thing but was left without a choice and took myself off of it. When you shots become so painful you start screaming from the med going into your body and another 15-20min after with tears and crying. Its time to say something isn't right. Now after she found out this happened and I got 'talked to' She wanted me to see another Neuro to try G...since its a pill.

Lets jump to this Neuro. Liked him also but after feeling like crap on Beta and even him saying 'yep it was a reaction and not normal' I didn't care if it was a pill or not I wasn't going to just jump this time. I thought about it for months...ended up bowing to pressure from my hubby and family and did it. Neuro ended up taking me off it after only a few months. (While the deaths where being looked into) I felt better off the drug then on the drug so when he called to put me back on it I said thanks but NOPE.

So back to old Neuro I went who wanted me to do TY...I'm JCV postive with 4 younger kids and a husband. This drug isn't for me!!! BUT NOOOO she won't listen and thinks UofM will change my mind...guess where I'm going tomorrow. I'm only going though so I can say I looked, I did listen and I DECIDED FOR ME!

Everytime I've come off a drug I end up with more lesions. When I came off of G this last time I ended up with 13 new lesions in my brain with one of them 2cm in size...to add to the ones already there. On the brightside I ony had 1 new one add to my back Those I've been told are to many to count and I have the problems to prove it....So why I ask should I go on TY to have to go off it in a yr or 2? Is it to see how many more I can get when I go off or is it for a vaca for the Neuro or free lunch for the wk? I hope a vaca...I hope I'm worth that a least! LOL

isamadjul
(allyson)

Thank You and I'm sorry you are going through this.

I hope they come up with something soon that I feel the risks will be less for greater gains. And I feel kind of bad because I in no way is helping to improve what we have available to us. But I already worry on a daily basis about whats waiting for me around the next corner with out adding NASTY side effects to it.
I also hate being told whats best for me by someone "who in mho I wouldn't trust to feed my fish" what is best for me.
I truly believe in some cases I know better than my Neuro. After my run in with Rebif I won't trust any other drug unless I have more info about and feel better about the risks involved.
But until they have something to tell me that I like I'll just keep to my diet, vitamins and exercise "Well I have to be honest. The exercise isn't my strongest point".

Hopefully I will not regret my decision one day.

Jay

[anneth121]

I tried Ampyra when it first came out. First day BAD headache all day. 2nd headache and upset stomach. 3rd headache stomach problems and diarreah (sp). 4th day - well anyway. You know costs a fortune for one month and asked neuro to take pills and give them to someone else who couldn't afford them. Said he couldn't. Signed a contract with the pharmacutical co. not to give them away!
THEY HAVE POWER!

[Thinkimjob]

No, some things are not left better unread and unsaid. Knowledge is the only power most of us have left.

I don't believe all neurologists are blood-sucking leeches, but I do believe people can't help but be influenced by gifts and flattery, and the desire to be ahead of the pack and cutting edge.

There's no cure for MS. They feel like they have to do something. They don't really know what works best.

They'd like to be involved with 'the cure', but failing that they want to back the right horse.

I can't see any other reason for being urged to stop Copaxone, told to start Tysabri, then told to keep taking Copaxone, then take Campath, all by the one woman, all in the space of three months.

They need test rabbits for trials, not that they'd put it like it. They probably don't even think of it that way.