Wow-right back at cha!
I sometimes doubt I have MS-but I'd agree with the doctor if it were anyone but me-
brain lesions, symptoms, etc- it makes sense-
I hate copaxone-I hate the feverish, angry red, itchy swollen lumps it leaves behind-I've not yet had any pock marks but that would be reason enough for me to stop immediately- I'm vain enough it would bother me. I stopped a month ago and I still have two lumps that don't seem to want to go away.

Thoughts of the monthly infusions of Tysabri OR the first oral drug fingolomid is to be released in September?

Fingolomid is more effective than copaxone, I think less than tysabri--its in between doesn't require injections and has been approved by the FDA to be used as a first line drug-so you don't have to fail with one first...

Maybe talk to your doc & hang on a few more months?

I stopped Copaxone after 8 months since I ended up having 3 big flares/relapses while taking it. I was on LDN at the time too. I have now been switched to Avonex, which I like much better. One shot a week, no injection site reactions ( no welts, itching, no pain at the site). I actually feel better. However, I do wish I could take the LDN because it seemed to help with my fatigue, but I have heard conflicting information as to whether I can take LDN while taking Avonex. I am not sure I believe in the "they cancel each other out" thinking, since they work on totally different things in the brain. But in order to gauge the effectiveness of one medicine, right now I am sticking with just the Avonex to see how things go. I am hopeful things will be better than they were with Copaxone.

I have been saying I don't have MS since 1999. I have taken no drugs. My lumbar came back clean of abnormal amounts of protein. Right before I was diagnosed a friend of a friend was diagnosed with lupus. The Lupus drugs caused terminal cancer.

Last fall the pain in my lower back was awful. I am tired of the pain and balance problems but after reading all the stuff about the drugs for MS I don't know what to do.

My new neurologist just isn't sure. Thinking of just dealing with the pain and wait till I have another MRI so they can see if I have more lesions. They don't have my test from 1999, After 5 yrs they didn't keep them and I have another doctor.

All my blood tests are coming back fine. I have something behind by left eye and lesions on my brain and upper spine. Other than the pain in my lower back I have no other symptoms.

I don't doubt i have MS, but I am still pretty healthy. My biggest problem is the fatigue. I quit the Copaxone and has decided not to do any other crab drugs. I am "treating" my MS with diet, supplements, chelation therapy for metalls and LDN. I stopped seeing my Neuro and are seeing an Intergrative/functional MD.
My latest MRIs showed no new/active lesions.
Best of luck!

I stopped Copaxone 11 months ago. I have not had any problems and feel better than ever. Last neuro appt on July 30th had the report of "excellent."

I went 6 years without treatment after being diagnosed in 2000. I had only 2 minor relapses and they went away quickly. I was aginst taking a drug that would only be 30% effective, and go throught the hassles with taking it.

THIS WAS THE WORSE MISTAKE OF MY LIFE!

I had a severe relapse in 2006, and have still not fully recovered from it. I now have severe relapses on average once every 15 months. In a recent MS conference I heard that if you wait 5 years without taking medication, then start an ABCR drug you will average a relapse every 1.4 years. If you go on an ABCR immediately after dx and stay on it you will average a relpase every 4.4 years. This hails all to true for me. I do not wish what I have went though on anyone, and regret everyday not starting on an ABCR drug earlier.

I stopped Copaxone last year after being on it for over 4 years. It was determined that I didn't have RR MS. I started taking LDN and that is all that I am going to take. It is a miracle drug!! I am so happy to not have to take a shot every single night.....the knots, stinging, itching......NO MORE!! I also take mega D3, since mine D level was extremely low, Alpha Liopic Acid and Tumeric, plus a multi-vitamin. Personally I don't trust drug companies or the CRAB drugs that they push on neuros!! More people need to hear about LDN and doctors need to use it to treat all sorts of illnesses!!! This is my opinion and I am sticking to it!! LOL

This was like reading something I had written myself! I have been on Avonex with extreme illness quit after 10 months. Started Copaxone in May 2010 was great 1st month then it started leaving dark discolored spots on my legs, the spots in my arms last for weeks and hurt for my shirt to rub. I am desperatly in search of someone to write LDN for me. I have 3 children ages 5, 7 and 12. The dr states what about 10 yrs form now... Well what about now. I feel like crap every second , every day now. I want to enjoy them, be there for them now. They need me more now then necessarily in 10 or 15 yrs. This is just how I feel.
The fatigue is insaine. I was on / off with the shots and have just decided it's time to stay off for me. I think those who do well on it that is great. I just think to some of us our systems react poorly. I feel like the 2 drugs I've tried were more of a poison to my body than help.

Just me and my opinion. Don't know how much sense it makes, I am frustrated myself if you can't tell lol! Good luck !!!

I was on Rebif but was just getting by. In January 2009 the doctor put me on Tysabri. 2009 I had the best MS year I have had. If There is such a thing. I have had ms since 2005. Unfortunately, in July this year I had to stop b/c they found the JC Virus in my blood which they tell you is a side effect of the Tysabri. OI had to be on a "Holiday" of Tysabri until February of 2011, However I had a exacerbation and I can not afford to wait until February. The doctor has me starting Copaxone, as soon as I can get my prescription assistance (insurance will not cover it). I liked the way I felt on Tysabri and the fact is was done once a month in an infusion site. I could handle once a month for a few hours. Now I am going to have to inject myself again but everyday where even rebif was 3 daays a week. I am not really liking the inject myself part! My neuro hopes that the FDA approves the new oral drug the latest by January 2011. My fingers are crossed!!

The new oral drug? Is it Copaxone, but taken orally instead of injected?

Bonnie j.

I really agree with dana2009. Quality of life is all important. If the cost of a slower disease progression is giving up a good quality of life forever, then the price is too high and I will opt for a better quality of life and faster disease progression. Our time on this planet is short. I'm going to make the most of the years that I have.