For those of you who do not medicate

[TED_lucky]

There is no current test to determine your future MS progression. It could be mild now and change later.

The other problem, there is no test to determine which of the meds might work best for you. Or which one you will be able to tolerate easier.

There is some test results that show on average those that use a med have slower progression. But no way of knowing how well it will actually work for you.

I am using everything possible to treat and slow the progression, and I have been very lucky so far.

[Thinkimjob]

Took Beta for five/six years, started the very week I was diagnosed. Felt bloody awful the whole time. Flu-like symptoms, my rear end.
Didn't know in the beginning whether it was the drug or just normal for ms.
I feel like I wasted some good years feeling sick and tired.
Stopped that one when I developed neutropina, which has something to do with a chronic shortage of virus-fighting white blood cells.
Had a few years off, really did feel much better.
Then the worry creeps in. Damage is being done that you're unaware of etc.
Started copaxone. I hate the stuff. It doesn't make you feel flu-like, but it makes absolutely everything sore.
I try not to miss two days in a row, because I find it very hard to start again. I have stopped once for a year, and started again.
Gilenya is in Australia, but it's $40,000 a year at the moment. Apparently, it makes you feel fairly average, too.
The drug companies have us trapped. It's not their fault, but we're all caught, because if we don't take the drugs and we get worse, then that's our fault, and if we do take them and we get worse, then that's just luck of the draw.
And if, miracle of miracles, we take the medication and we do well, then that's all down to the drug.
I've had ms for 13 years now. I could be worse, but is that down to taking the drugs, or just the natural course of my particular version of ms?

[Loved]

AshNight,
I've been diagnosed for 27 years and have not used any of the DMD's either. In fact, I take no prescribed medications.

I also steer clear of steroids. I have found the best medicine to be eating healthfully, getting adequate rest, exercise, taking myself off the world's treadmill, and putting my trust in the Lord Jesus Christ, the best Physician around!

He has done marvelously for me. Loved

[onlyairfare]

My MS was strongly suspected in 1975, but I knew there was nothing to be done, no medications, and being firmly diagnosed would just cause me to lose my health insurance, and suffer a lot of discrimination, so I ignored the suspected MS for decades, and did not take any medications.

I had mostly ON, and one episode of a very weak leg, as my only exacerbations during 1975 - 2002, so even when the meds became available, I still felt I was doing well, and the meds would not make a big difference, if any, since I was already having a "mild course." All my ON and other relapses resolved completely.

In 2002, I had a bad relapse with weakness in my other leg that did not get better. So I went to the various doctors, got officially diagnosed, and started Copaxone, which I continued until 2008. I have not had any relapses since then, before or after stopping the Copaxone.

I stopped because 1) the co-pay went to 25% of the list price of $3,200 per month, which meant I had to pay $800 per month (that is almost $10,000 per year on top of the $1,500 per month for insurance, not to mention co-pays for other meds and doctor visits and MRI's, etc), then 2) I was tired of shots every day.

I moved to a new state and got a new neurologist, an MS specialist. Unlike my other neurologists who all thought I "should" take DMD's, this doctor thinks my MS has kind of "burned out." I haven't had a relapse in years, and I feel OK with symptom control by medications, and I work full-time at a job I love. So we agree that I am doing "good enough" not to have to take DMD's. My MRI's have been stable since 2002 when I had my first one. If I get worse, I may go back on DMD's, or I might not.

[freeinhou]

I was dx'ed February 1988. I drew a very high number in the beta lottery in 1993 and was told probably a 15 month wait - never did go on beta.

My annual MRI in 2003 showed a large increase in lesions and scared me into getting copaxone prescribed. I took maybe a dozen shots before I decided it wasn't for me.

Reason for not taking one - I question their effectiveness and don't consider the side effects worth it.

How do I feel? Fine. MS is slowly progressing, with spring and fall relapses. My feet hurt 24/7 and my legs are numb from the knees down, but other problems have come and gone.

I still work and play. I don't tell anyone I have MS and nobody suspects there's anything wrong with me. You wouldn't believe what I do for a living.

I take blood pressure medicine only. I credit my success with living with MS on my diet - bar-b-q and beer.

Tom