Back from the map!!!

I am on DMD's (well was, took 2 week break, and will be again in less than a week!).

When I was first dx in 1996....I said NO to the DMD's - I am not one to take meds lightly, I wasn't having any serious symptoms, and I just was not taking them....Mom, doc had NO problem with that either....

Crank the wheel up to Feb 07....GIVE ME THE DMD's!!!! I was one sick sick puppy! One exacerbation from you know where took care of all my worries about putting anything in my body....

But as Doc and I discussed on my last day in the hospital...I told him, "You know when I get back to feeling better, I'll be doubting everything you tell me including the DMD's! And you'll have to be sure I behave!"

Sure enough I have been contemplating not taking this 3rd DMD....and just today a sweet friend from here told me that when she was my age and had no meds when her kids were young, she wished so much for them. And here I am, thinking about not taking them. And there are my kids.

Decision put back on yes. I will take them for my kids, even if I'm not so sure I'll take them.

I hope this helps you Julie. It is totally a personal decision. And your doctor will support you no matter what you decide. Mom, if your doctor doesn't support your decision, then you get a new one!! You pay THEM for their expertise!!! And Docs are just people!!! That is all - regular people with the expertise you need! (just like car mechanics - sorry Doc!)

Good luck!

I am able to live a pretty normal life, I have been married for 34 yrs and have 4 kids. I walk a little gimpy but I am hanging in there. Thanks for asking boomer lady

Hi, boomer lady. Thanks for posting about your journey with MS. I am not on DMDs (take a lot of supplements though!). So far so good but I am only about a year post dx.

Wow, dx in 1979, never used DMD's meds, and doing so well? You are very fortunate . . . and way to go!

Got any tips?

Cherie

I learned to always keep myself active-exercised-I used to jog a lot so when I couldn't run I walked when I couldn't walk so long I now use a treadmill. I rode bike a lot and when I could no longer ride bike I now ride a stationary bike. In other words when I lost something I just did it differently. I got to know what my body could and could not do. Try and make your body go as far as you can, take yoga classes helps with balance. I lift weights to keep my upper body strong. There have been times when I was stiffer than a board and by just keeping up movement it got better. Note do not overdo yourself just learn what your body can do and fight if your body rebels. The biggest thing for me was attitude-positive-I know there are a lot of things that I cannot do but oh there still are a lot of things I can still do (albeit kinda gimpy and odd. Hope it helps sorry for the sermon boomer lady

I'm on Beta. But my nero did tell me that should I decide not to take the shots, he wants me to know that he will be there for me just the same. Great guy!!!

Hi Boomer,

I currently take no MS disease modifying drugs. I am RRMS, dxd. 12/01. I took Avonex for 2-1/2 years but it actually made me worse. I was in pain 24/7 and was very close to filing for SSDI thinking it was my MS.

After my experience with Avonex I decided I was taking a break from MS meds. That was 2004 and I have yet to regret my decision. I recently had an attack of ON, but thankfully it was mild. I actually had more exacerbations while on an MS med than off!

As to how my neuro reacted to me stopping the meds - he said that while he wanted to see me on some type of disease modifying drug, it was my body, my decision. Good answer!

I am still working full-time and am doing well all things considered. My worst symptom is fatigue.

Another one here - no DMD's. I kinda lost interest when I drew a very high number in the Beta lottery in 1993. The FDA approval of Beta surprised alot of people - the clinical trials weren't very positive. We had a bulletin board on Prodigy where we tracked the early trials.

I did do the steroid IV thing once - in 1988. Not for MS. I was in the Optic Neuritis Treatment Trials.

I was on copaxone for less than a month in 2003. Got scared (briefly) when I saw how many lesions were on my MRI that year.

MS doesn't really bother me. I walk gimpy but it's a toss-up between whether it's due to MS or to poor circulation.

Tom