I can't tell you how much I appreciate all your responses and DMD stories. I helps me to know you better and feel your pain.

I believe it helps us all....Keep them coming!!!!

Was on Copaxone for 1 1/2 years...and was getting increasingly severe symptoms. so neuro decided with me that I am off of the C and on to a clinical study next month...it's a B cell agonist, which he feels may work better considering the sxs.
I love not taking shots, but hate how my sxs have increasingly gotten worse.

Wow after reading your horror stories I guess I should count my blessings. I started Copaxone 5 years ago right after diagnosis. My MRIs are stable, or as stable as an imperfect process can be and I don't have any issues with the injections other than local site reactions and some dents in my legs.

As for my daily MS I'm still able to work like a dog but I'm tired all the time when I'm not working and need about 10 hours of sleep each night. Have times of minor nerve pain, paresthesia, increasing bladder issues and some bowel urgency, yippee.

I'm too afraid not to work as much as I do because I think not having the income I am used to would actually be more stressful for me than working is. Sucks that at 45 I should even have to worry about this kind of *****.

My first DMD was C. I stuck with it (no pun intended! ) for a year but it wasn't helping me. My MRI showed more lesions. From that I went to Betaseron. The side effects were terrible and my next MRI showed more lesions. I decided to go off of all DMD's and give LDN a try. I felt so much better within just a few days of beginning it. Like Sally said, it's not a cure and shouldn't be thought of as one......but it certainly made me feel better. I have learned throughout this journey with MS that I know my body better than any doctor or specialist does. I listen to them and then make my own decision about which meds to take and which ones I don't want to subject myself to. Guess I got tired of being a guinea pig. I really don't care if my Neuro thinks LDN is a viable choice in my fight with MS. It works for me and that's all that matters.

I'm back on Copaxone again as of about mid January or so. I was on Avonex first at DX for 18 months, in a clinical trial, and that only worked so-so for me. I still got new symptoms while on it. Switched to Rebif for only five months because I developed severe depression and anxiety while taking it and anti-depressants didn't help at all.

Then it was Copaxone for 18 months and it worked pretty good. I switched to Tysabri (stayed on it about three years or so) because of all the good things I had heard about it. But it didn't work as well for me as Copaxone ... so I'm back on it and plan to "stick" with it for the long run. It has a very long track record of safety and it's working so I'm hoping it keeps working for me. I'm still working 40+ hours per week and working my heinie off too, lol.

I was on Avonex for 3 years. I didn't mind doing the shot but had problems with flulike symptoms in the first year or so. I never missed a shot. In the third year some "bowel urgency" issues I'd had began getting noticeably worse. Then one night a few hours after the shot I passed out and fell.

Interferons were out for me from then on, and after a year or two of thinking about it (these things take time), I decided to try Copaxone.

It was going beautifully, I thought, but some time in this last year--my third year on Copaxone--I again began having big problems with "bowel urgency."

This was getting too uncomfortable and too hard to deal with, and so I went off Copaxone about a week ago.

If I thought there was a remote chance it would help me, I'd stay on it, but I don't think there's any real likelihood. They don't know enough about what these drugs do to people my age, people who've had MS as long as I have (over 30 years), or people with SPMS.

In fact, I've never found any evidence that they've studied what the ABCR drugs do to people with progressive forms of MS other than a few that say they don't help.

Also, I live alone. The IPIR some people have while on Copaxone never happened to me, but I was always concerned that it might. I know it's rare, and I know some people sail on through it. I have two phones and a cellphone and an emergency pullcord in my apartment but still--who wants to go to the ER?

Like Kitty says, no one knows how I feel better than me. I've had neurologists, who could and some who could not, get out of their boxes and/or really listen to me and my wants and needs. Doctors I see maybe every 6 months and know my name cause they read it on my chart as they come in to see me. Very anti-doctor right now except my female PCP.

I agree, kicker.

Spending a few years with your own MS may not make a person an expert on MS but it does make you an expert on what your body is capable of--and it teaches you always to be ready for something weird and unexpected to happen.

I'm always surprised at how much medicine people with MS are taking--and some of the rx's can have a big effect on the nervous system.

I try to tell myself these people are having a rougher time than I have and therefore must need all those meds.

On the other hand, I also see lots of people on boards who have an astonishing trust in their doctors, whom they have such a high regard for that they will do and take whatever the doctor says.

I'm all for trusting one's doctor, but there's a lot to be said for checking up on whatever advice he/she gives and whatever meds are prescribed--and thinking seriously about whether you really need them.

After all, everything you take in is going to have an effect on YOUR body.

I still have a file on all the research I did on the DMD trials in the late 80's and early 90's...

I was in the lottery for Betaseron when it got approved in 1993. I drew a number in the 27,000's and was told it would be 15 more months. I lost interest.

I had an MRI in 2003 and my lesion count shot up to over 30. I got scared. I even got my copaxone prescription filled twice. I took maybe 20 shots. No - the shot thing is not for me.

So no more MRI's for me. I don't want to know.

Ignorance is bliss...

Tom

I posted a thread back in March about my issues with Copaxone and anxiety.

I was diagnosed with R/R back in 2005, but probably had mild flares well before that. On Copaxone for about four years before I stopped taking it (will be informing the neuro in a couple weeks--*gulp*).

No flares or improvement in five years, just the same symptoms that come and go, get worse, get better. I suppose I'm SPMS. I'm not happy about that, but if so, at least the decision about further poisoning myself is somewhat taken out of my paws.