[Dejibo]

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!

How can I get these folks on the same page?

[Snoopy]

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

[kicker]

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.

[Dejibo]

Originally Posted by kicker

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.

[agate]

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.

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.

[kicker]

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.

[Kitty]

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.

[daisy.girl]

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.

[notasperfectasyou]

Originally Posted by Snoopy

The majority of meds prescribed for MS are used "off label."

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

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

[Debbie D]

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.