I was diagnosed four months ago from an MRI, I know a guy that was diagnosed at age 17 and he is now in his sixties. He does not like meds because of the side effects. I have been perscribed copaxone by my neurologist, but it is so expensive that I am waiting for finacial assistance from the company.

I was just "re-diagnosed". I was first diagnosed 32 years ago, but have had barely any symptoms to worry about. Now after visual aura, Dr. did an MRI (30 lesions), CSF (all okay), VEP/BAER (VEP=abnormal). I feel great and don't see any necessity to take meds, but Doc is recommending I start taking one of the CRAB drugs. I'm just not sure it's necessary - both the expense and side effects. We'll do another MRI in 6 months to see if lesions have increased.

I have PPMS, dignosed in March 2009 and had it since I was 25 yrs old. (I am 40yrs old)
My MS Dr. does not want me to take medication, just lyrica and Baclofen for pain and spasms. I feel that exercise and a good diet through out my life has made me handle PPMS now. I am delighted to not experience the side effects of most of the MS medication.

BUMP!

I was on Avonex and Copaxone over a period of 5 years...when I started having trouble walking. The doctor switched me to Rebif, but I continued to get worse. I got him to give me LDN which I still take but the only other DMD option he gave me was Cellcept which I declined. Now two years later, my walking is terribly worse, I have new lesions on my spine and he has me starting Tysabri. My first infusion is 8/6. (Why didn't he offer Tysabri to me two years ago..I wonder?) If you can tolerate the drugs I would not risk going without them. My two cents.

Hi Sheriz. I was on Avonex for 10 years and don't believe it helped me much. I've had 3 relapses in 22 years so that was not the issue for me. Like you, I kept going slowly downhill,

I ran into a woman about my age with MS at one of these drug presentations. Outwardly she looked great. Her Dr. tested to see if she had developed antibodies to Avonex. The test showed she did and she was switched to Rebif, I asked my Dr several times to be tested. He didn't believe antibodies were a problem so I never got tested. I thinnk you may want to look into other options,

I'm pretty disabled today and wonder "what if ". Of course that is not going to help now but I wanted to share that with you so hopefullly you will have a better outcome,

Take care,

Melanie.

BUMP!...I thought I bumped up this post, but I looked for it & couldn't find it anywhere. So I did a new "search" for it!

so I'm bumping it again because I'm having questions about what people think about NOT being on MS meds. & I wrote a post as to why my Neuro. thinks I my body can't handle being on MS meds.

Take care,
Stay sane!

I have noticed also how the good side of my body barely shuts down, it is only temporary. I think that it has been there from the begining, I think that improvement on my bad side has allowed me to notice the good side.

I had to go without the drugs for a few years & the progression was obvious to me physically & was evidenced on MRI's. I went blind in my right eye & could barely walk w/out help. If you can tolerate the shots & side effects for me it is totally worth it.

I have had MS for 20+ years and have been on Beyptaseron, Avonex and Rebif. I have also had steroids for Optic Neuritis. I took myself off all drugs last October and told my Neurologist that I would not consider Tysabri. I am on Ampyra for my walking and Neurontin for pain but other than that. Nothing!

I just don't feel that the crab drugs can help me any longer. I am on SSDI and no longer work. Mentally I feel so much better. No brain fog or injection site problems. I do fall a lot however. Need to fix that!

Good luck in what you decide to do!

Has anyone here ever gotten better off of prescribed meds? I would like to know if I can look forward to regaining normal feeling in my right knee when I finally find a specialist that accepts my insurance or if I'll always be that way?

I was diagnosed 2 weeks ago and put on prednisone, but in the last week, my right knee has become numb while on the meds. Isn't prednisone/deltsone supposed to improve symptoms or atleast slow it down (I was given prednisone to treat my ocular neuritis( which is how I found out I have MS), which has gotten better) ?4 days into my IV treatment my symptom of vertigo also came back. I hadn't had it for months. Has anyone else experienced this?

I am not on any crabs. Dx july of 09 with RRMS no symptoms of MS and no flare ups. I am on LDN and my doc is upset and trying to put me on some which we did a blood test for interferons which don't work for my body. I live a normal life without any issues

All the MS meds make me sick. I am not on anything other than (it seems) an almost yearly blast of IV steroids...WHICH I HATE. MS symptoms come and go, but lately they seem to come much more often;(

When I was diagnosed, I was determined to fight this disease without drugs. I had always fought things naturally, and after reading about diet and supplements that help many others, I was determined to go this course. However, after reading the Tip of the Iceberg article by Dr. Vollmer (the article was posted by nnyl1 but Ill post it again below), I decided to go on Copaxone along with drastic dietary changes, supplements, regular exercise, stress reduction, etc.

My thinking on this was simple: attacks on the mylin sheath could be on-going despite no clinical symptoms at the time due to the brains ability to re-wire, but that, down the road, when the brain maxed out its re-wiring capabilities, things could come crashing down.

So, Im taking the copaxone thinking it will slow down whatever is going in this body of mine, and doing everything else I can think of (diet, supplements, exercise, etc.) to hopefully stop the root cause of the disease (whatever that cause is). I know its a shotgun approach, but at the time it seems to be working for me. Might be that I just pushed the top of the proverbial iceberg under the water, but Im hoping its my own version of a global warming!

As a side note, I have very little side effects from the Copaxone. Im not sure, however, that I would be up for some of the other drugs that reportedly have significant side effects.

Just my 2 cents on the issue.

http://www.mscenter.org/images/stories/InformsSummer09lowres.pdf

Well said Jim --I just wish I could go back to when I was 30 and had no symptoms and start one of the ms drugs--I miss my old life