I take Baclofen 10mg x 3 per day, Co-codamol 30/500mg x 4 per day and Valium 5-10mg PRN. I have fibro as well as MS.

I consider it every so often, and always decide to continue with Avonex. It's all about slowing the progression. It would be nice to know that it's actually working, and that all this grief isn't for nothing. I've been taking it for 51/2 years, and things have been pretty quiet for the last 4.

I stopped, cold turkey, for 9 months. I felt better at first, but I think that was mostly just the freedom of not having to worry abou which drug to take and when.

I'm back on several drugs now, reluctantly, and I can not say that I feel any better, but somewhere in my head I understand that they are doing something for me internally, if not emotionally.

I took avonex for a year, to stabalize my flares, and just recently quit. I love it. HA. But of course there are risks. I could end up crippled. however, it's important to note that the CRABs and the LDN aren't the only therapies. Some people live symptom free just on a particular diet. I plan on being one of those people. If it doesn't work, there's always the drugs. But to try one imperfect treatment but then be too afraid to try any others seems silly to me. I'll try as many as I can and whatever works best, I'll stick with.

After 10 years and a flare ups that appear to take a little bit more of me each time I'm contemplating them. However, I've had a hard time finding a good neuro who sees patients daily and has some sort of bedside manner or at least pretends to care. The area of CA that I'm in is notorious for uncaring doctors probably due to patient overload. Another reason I'm putting it off as long as possible is so that I can have insurance coverage 'if' there is extensive progression...ie. higher costs of care. I'm a type of person that only goes to doc when I REALLY have to. LOL

Well I have had only one flare and that was my diagnosis, otherwise no symptoms. I experienced 1 issue with fatigue which lasted a couple of days in 08 othewise I am fine, so the thought of the drugs just scares me,plus the cost even though I have insurance. My last MRI May 09 said extreme slight progression, so here I am and that is my story. Hopefully I will figure it all out. Thanks to all who replied.

Unfortunately, none of the drugs are a cure. Neurologists also don't really tell you the natural history because in my experience they are trying to scare people into taking very expensive drugs that all the neurolgists know are not really super effective. All the drugs just GRADUALLY slow down the disease process. All the published literature shows a gradual difference in disability between not taking a CRAB drug vs doing nothing.

Additionally, the rate at which the disease progresses seems to be the most important indicator of future disease. There are MANY natural history studies published. See: Neurology 2004, vol 62, 51-59 which is a 10 yr follow up study from the MAYO Clinic. In this study, you can see that people with EDSS below 5 seems to still be below 5 when measured 10 yrs later.

Not all of us will be in a wheel chair.

Thanks Biker for replying, I feel that I don't want to feel like death for a drug that might help very little, so I think I will continue to go as I am and hope things will be ok.

refused CRABs, only on LDN since 4/17/2003 http://www.larrygc.com/mystory 3.0 MG

In my case, when I was first dxd, my symptoms were temperature changes and pins and needles, mainly in my legs. I was determined to stay drug-free as long as possible.
When my next relapse saw me collapse because my right leg gave out and forced me to use a cane to even get to the bathroom, my mindset changed rather quickly.
This is only something I've pondered while reading responses, but I do wonder whether in some cases it's the type of symptoms being experienced that influence the decision? Are we quicker to agree to the meds when our physical movement is affected? I know that's not the case for everyone, but it was certainly a factor in my change of heart.

Personally, I have tried to attack it from all fronts, including meds. I was dxd 8 years ago and immediately began rebif. Medication (and knowledge) is the only thing that seperates us from patients 100 years ago. They do three things: prevent relapses, prevent future disability and reduce MRI activity. These are three very good things, no? I'm in between meds right now and even for this past month and a half w/ no meds, I feel naked.

While it is true that someone will progress no matter how slight, it can be cut back. The best thing out there currently reduces lesion development by 42%. that's huge. That means for every ten lesions that develop, four won't. That's not chump change. That's nearly like saying "I have half MS". One of those four lesions could have been your biggest nightmare. And there is always ongoing research and development.

It basically comes down to whether you want to feel side effect sick, or MS sick. The meds will reduce current and (especially) future disability rate. The nature of the disease is such that in everyone here's brain/spine, progression is happening whether you feel it or not. That's scary. I mean, it's your freakin BRAIN! It's not like a bad haircut and it grows back.

I only use a high dose of cannabis. I have no other options.

Because I am PRMS I have very little if any improvement after a relapse. I spent most of last summer in wheelchairs or scooters but was slowly increasing my dose.

I now have the correct dose that has allowed me to go for the last 8 months without a relapse. I am back to walking with my cane and am continually improving. I also have an MRI that shows some amazing results that can only be attributed to the cannabis.

Next week I meet with MS researchers to share my findings.

Yes smoking a joint or two will always offer some relief, but no where near the relief and comfort I have by ingesting high doses.

If you have never seen it... watch this movie.....

http://www.phoenixtearsmovie.com/

Then look it up if you still don't believe it.

xaviermom74, i will share with you the wisdom given to me by the dr that diagnosed me.

when he started talking about shots and pain medications i freaked out. i've always been sensitive to medications and i really hate taking pills. like phobia level hate. They scare me.

My very kind and very honest mayo clinic dr looked at me and said that he doesn't care if i take the medicine. it's not his responsibility to beg me to seek treatment. he only supplies options. I am the only one who can choose how much of a risk i'm willing to take with my mobility, cognitive abilities, quality of life and ultimately, death.

That was the best advice I was ever given and it's completely true.

Tonemore, you wrote

"From what I have been reading it seems like about a 50/50 chance of a long/fullfilling/mostly functioning life or ending up in a wheel chair (many with early deaths.) (Not saying that people in wheel chairs cannot have fullfilling lives or that they necessarily will die early.)"

Actually, that is not true. People with MS have a 20% chance of ending up being in a wheelchair, and only 5% of people with MS end up completely immobile.

Also, the CRABRT meds don't reduce the amount of time between attacks, but they slow the progression of the disease, meaning they make it take longer for your disease to get to the the point it is going towards. One way we can see that is by the frequency of attacks lowering. Kind of like when you are watching a video. You can hit the slow button and the tape slows down, but it still eventually gets to the next scene.

Check out the literature from the National MS Society to learn more. (I worked there before I even knew I had MS and everything I learned there helped me deal with the MS dx better). Let me know if you have any questions! :)

Glad to hear I was wrong!
I hate taking my Copaxine shots, but still grateful that there is a drug that might slow my progression.