Do they know what they are doing? or is this a guessing game?
 

Most diseases have a pattern to them. consistancy at least. From day one, I have noticed nothing but INconsistancy in this whole flawed process.

MD #1said "nope,not MS" MD#2 said "OMG HUGE! MS!"
MD#1 said this med works great! MD#2 said "nah, its a bad med"

And so on. I am having trouble getting MDs to agree on anything! This MD said Copaxone can cause XYZ, and then the next guy said "I dont see that!"

Why are WE the patients caught up in the middle of this exercise in frustration? Why cant we go to an MD and have them say, "take pill Q and your walking "should" be better" not even a promise of it, just some knowledge about it.

Cant tell us why CRABs work, but want us to keep taking them, even if they make you sick.

Is anyone else seeing this pattern in their circle of MDs? My primary and my MS and my GI and my surgeon cant all seem to get on the same page at the same time! This is really scary when you are the one in the middle taking all the risk! :eek:

How can I get these folks on the same page? :confused:

MS is about therories, there isn't alot known about this disease. Everything about this disease is a guessing game. The majority of meds prescribed for MS are used "off label."

Some wonder why I don't believe in the DMDs. How is it possible to have medications slow a disease down or help when the disease is not understood?

Then you have to figure in each persons reaction to medications. What a medication is prescribed for and how well it works or doesn't work depends on the patients reaction as well as the disease.

Doctors don't understand the disease, researchers don't understand the disease and patients are left confused, angry and without answers...makes perfect sense :Ponder: :holysheep:

I've decided I'm in charge. MS for me has meant too many doctors, too many opportunities to see non-agreement. The urologist who helped banish the UTI from hell wants me to take Miralax every day, get dosage correct for pooping every other day. I did poop every other day, but it was like fudge/pudding and icky to wipe. In Autism forum read some about constipation and Miralax (same results), put myself on Phillips laxative (uses magnesium not gly something Miralax uses) and like results better. He's a good urologist but does he know s***? I take what I believe, choose which advice I follow. I think ultimately I'm alone on this journey.

EXACTLY!

I see so many special this, and special that, and they are just making it worse! I went from being relatively stable, and minor flairs, with some issues, to...Severely elevated liver enzymes, pancreatitis, sjoghrens from treatments, severe dry eyes, massive anxiety attacks, constipation to diarrhea, and back again. I just want to start screaming!

STOP HELPING ME! what you are doing is the opposite of help! Im tired, and dont know how much more punishment my poor lil body can take.

I don't think they have much of a clue. I was really reluctant to go on any DMD in the first place because I didn't think enough was known about MS or the immune system.:confused:

I still feel that way but have climbed on the Avonex bandwagon and now on the Copaxone bandwagon, just bouncing along for the ride. If it makes the docs happy for me to be taking one of these injectables and if it isn't doing me any serious harm that I know of, I'll take my chances and shoot up whatever it is.

"Harm that I know of"--that's one problem, isn't it? So many new drugs that look perfectly wonderful at first have turned out to cause some ghastly type of cancer many decades later, and these drugs haven't been around long enough. But that's just one of my nagging doubts about taking a DMD. I try to keep it on a back burner.

Sometimes I think all the special this or that doctors need to find problems to justify their existence or so you can't sue one day for negligence. I'm on an anti-doctor roll right now, With PPMS DMDS I've tried don't work, Besides MS I'm pretty healthy, have no pain, I'm 54, leave me alone. My PCP is always there for me if needed. I've got better things to do. I've also heard too many stories of "cures" resulting in things worse than the ailment.

We're the guinea pigs for these doctors. They're learning from us. That's one of the reasons I don't use a DMD anymore. Too many side effects and no benefit.

I agree with Kicker......we're alone in this journey. Our doctors can give us meds to relieve some of the sx but for the most part we just need to do what works best for us....individually.

I agree with you all too. I was just diagnosed in Jan with RRMS....but have chosen not to use a DMD and just on LDN at this time.

I have been in the medical field for over 25 years, and my research on the DMD's just did not make sense to me.

I am glad I am not alone in my thinking process....and just a few weeks ago, they said there are two kinds of MS....one that works with some DMD and one that does not.

They just don't know....and that is the bottom line.

Thanks for saying all that so clearly. I think it's important to understand the landscape of MS. I don't say this to demonize any part of the landscape, but I think everyone ought to know the interrelationships between all the parts, especially when meeting with the doctor.

You'd have a plan to learn about whether the price of the car you want to buy is a good one. You'd have a plan to find a trustworthy plumber, right? You'd think about the schools, taxes, past values and job security if you were buying a house. So, thinking about pharma, the FDA, the doctors, journals, medical schools, etc. makes sense in thinking about medications.

Doctors have judgement and those judgements wouldn't always be your own if you were fully informed about them. Sometimes they would be. But, many of us like our doctor because...... well, we LIKE our doctor. He/she is nice, professional and has a clean well managed office and they spend time with me - none of which really equates to expertise in my medical issue. You'd research and learn about flat screen tv's so you could ask the salesperson a lot of good questions when you went in to shop. We should do the same with the doctor. Ken

I am kind of on the fence on this issue. I am on my third-no fourth- neuro. The first said, "Migraines." phooey.
The second said, "It's your fibro." More phooey.
The third said, "Maybe MS...let's watch it." After a year and severe leg spasms, "Probable."
after diddling around with that neuro's NP for months, I found the present neuro (thanks to Wiz)...so far he's been on top of things, taking me off of meds that weren't doing anything good for me, and putting me on meds that have at least helped reduce some of the sxs.
Now he is being proactive, IMHO, by suggesting a clinical trial. Is he just using me as a guinea pig? I have to have faith, I guess. I have been told by nurses in the field of MS that he is world-renown. And he vows to take me out of the trial as soon as I wish to be out, or if he sees it's not helping me.

But, he is a doctor, a group of humans I have been kind of prejudiced against for many years and many reasons. It's hard for me to trust...but so far he doesn't seem to have steered me wrong.

Neurology is at best a guessing game, since the brain (and the eye) is the final frontier of the body, and is amazingly complex. I just pray that they find the cause in my lifetime, just to satisfy my curiosity.

I feel blessed in being diagnosed at a time when there is so much research going on with this stupid disease.
My PCP lets my neuro handle things neurological, and she takes care of the rest. No interference, or differing opinions, which spares me the confusion some of you seem to have regarding what is best for you.

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! :confused::o:mad::confused:

**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. :grouphug:

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. :rolleyes:

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. :hug::hug:

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!:circlelove:

That is right where I am now. :hug: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 -- :hug:

Sorry Holly..:hug:

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

Sending hugs and good thoughts to Dejibo and Holly. I hope you both get though each day with very little problems. We are here for both of you, whine, rant, complain, because it helps.

We understand, we listen, we care. I know just going about your day is hard. I wish you both guidance and insight to make life better for both of you.

Dej, I had the best of the best MS specialist. Yet he was single minded. I just did things my way, because it was my body. After the fact, he had to listen. I got into another MS group of doctors. One is the head guy and he was so much more open to my opinions.

He did not force things down my thought. He offered his ideas only and listened to my yes or no's. No fighting. We don't go to the doctors to fight them, we feel like crap and they should know that, and adjust.

Many Neuro's have Psychiatry as a sub specialty, so they should be a little more compassionate, IMO.

My neuro is very similar. He tells me my options and gives his professional opinion and then it's up to me to decide if I want to go with his professional opinion or not. He never argues with me. He simply says if I change my mind let him know.

Recently, through his website, I found out he has sub specialty in Psychiatry. Funny...I have been a pateint of his for 25 years and didn't know that. He is a wonderful neuro with a great sense of humor, very kind and commpassionate. His daughter is also a doctor.