Anyone else stop meds?

[sprinkles]

Yes, I am currently part of the no DMD zone. I'm 42 and "probably" had MS for as long as 20 years (never diagnosed - 20 years ago I was diagnosed with "chronic fatigue symndrome" - yeah right).

Anyway, I was never diagnosed, but looking back the symptoms came and went (I chalked everything up to work injuries). Anyway, almost one year ago now, I walked into the doctor not being able to read - bam emergency brain surgery for a "tumor".

Long story short, it turned out that it was MS. Even recovering from brain surgery last November, I was doing WAY better then after I started Avonex in January. I WALKED into that hospital last November 2009, by May 2010, I was bedridden and could hardly walk a few feet.

The side affects were horrible for me, beyond description, plus, at that point, I had a horrific ego-maniac doctor, who told me that "I HAD TO BE ON A DMD". He was furious when I quit.

At least now, I have a great doctor who's opinion of DMD's is not very high. He has been totally understanding of MY desicre to not be on anything right now (I'm still recovering from the affects of the surgery itself).

He treats me as a human being. Personally I'm convinced that the Avonex triggered something really bad and started this progressive downward spiral I've been on (I've gone from a cane for 4 months to a walker).

I'm not saying that I won't be willing to try something in the future (my doctor and I are keeping an eye on the oral medication).

For me, I am lucky and cost was not a factor (my co-pay was insignificant), but I made a concious decision that my quality of life now was more important to me. Like I said, I just can't describe how sick I was constantly on the Avonex, it never got better (actually worse every week). Yes, I know there are other ones to try, but I'm just not interested. For now, I'm just working on making strides to change my diet and lifestyle, plus cut out as much stress as possible.

For me, I just can't let the fear of the future rule my life today. For those of you on DMD's please don't take my comment as a slam - we all have to make our own decisions as to what is best for ourselves.

Tammy

[0485c10]

IMO-More Power to you. You GO Girl!!!

After that experience a person has to give the body time to heal-- I think you are someone who listens to your body and responds to its needs. I can tell this because you have not ruled out ever treating MS, keeping your eyes open to advances in meds for if & when your body sends messages to you that it needs it now -nows the time for MS meds! Some time in the future you might get that message from your body but now it is sending a message to give it time to rest & recuperate..

I never stopped meds once I started, 5 years now. I switched meds in that time. But I was resistant to starting them at first. It was when the DMV refused to renew my DL unless I started treatment for my MS that i began to think I might start losing thing I don't want to lose unless I treat this MS...so thats when I began.

I was diagnosed at 41, in a much less dramatic fashion then you. But it was a multisymptom attack that finally made it visible enough for a diagnosis.
I was diagnosed in a ER with possible stroke or MS..they did the MRI and it showed MS and that I had MS for a long time.The doc told me that because it became "visible enough" to be diagnosed at a later age of 41 it meant it was a less agressive MS then admitted me to the ICU overnight. The ICU seemed rather contradictory to his previous statement

I refused meds for the first 8 months mostly because I didn't have insurance & didn't know about PA programs & if I had this for a long time without needing to treat it why would I need to do that now?

My doc advised me to take this seriously because it was a severe attack But it wasn't until the threat of the loss of my ability to drive that I took it seriously ENOUGH to start meds for it.

What I got from delaying meds, I'm glad I did, first of all.

I think there is a huge panic to start meds. Sometimes when I see replies that "you have to start a med 'right away" or limbolanders that panic because they need to be diagnosed right away so they can start treating it...I just want to shout slow down.

Ms is a slow moving disease, its not a cardiac arrest where the ABC need to be maintained(airway,breathing, circulation) or death is gonna happen in 3 minutes. MS even when aggressive is a slow moving disease--there is time to determine the need for treatment and be confident of your decision. For me my confidence in treating my MS came with what looked to be an immanent threat of the loss of my driving ability. I retained my DL, by the way.

For other it will be MRI feedback or ongoing relapses--whatever it is there is time with MS to become confident in the need to treat your MS..IMO

I think this "panic" to start treatment immediately is a legacy when MS treatment was not thought to be necessary so insurance companies did not pay for expensive MS treatment. A HUGE PR effort had to be launched & maintained to get MS treatment included as a necessary treatment & therefore has to be covered by insurance companies. But the successful PR effort to get MS meds covered has morphed through the years to "you have to start meds right now!"

I think there is time to decide to treat it & feel comfortable with your decision. That why I respond More Power to you! You go girl! Your keeping your eyes open for the future, that's whats important.

[0485c10]

My reply may sound confusing to the originator of the thread because I looked at page 2 and thought sprinkles was the thread originator, but what I wrote is what I think about treating MS whether sprinkles or msdoesntruleme started this thread.my thoughts are the same for either person.

[agate]

Hi msdoesntruleme,

I just saw this thread and wanted to say that I'm not any MS medicine at present. I tried Avonex for 3 years, ran into a problem there and had to stop, let some time pass, and then tried Copaxone for nearly 3 years.

I didn't think Copaxone or any of the ABCRs would help me. I've had MS for too long (30 years) and it's SPMS. Many neuros want everyone with MS on one of these drugs, but I found that the problems they caused me didn't make up for whatever good they might have been doing. And I couldn't see that they were doing any good.

If I were recently diagnosed, I'd probably feel differently.

[sich59]

I'm not taking any of the interferons anymore, but I still get the monthly infusions of steroids and cytoxan. Plus I take 4-AP and LDN daily.

I can't say for sure that the 4-AP or LDN helps (they seemed to when I started them long ago), but the infusions still do. The reason I know that is I went through a period where I stopped the monthly regime and the symptoms got a lot worse.

So I continue this regime for now. The best I can say is that the symptoms haven't spread beyond where they started.