Multiple Sclerosis (MS) Support Group

The crab drugs do not stop the ms just hopefully slow it down.
I am not on any of them as I reacted very badly to both betaferon & Avonex. I am not happy about being on nothing as the new symptoms keep coming & I am averaging a flare up about every 3-4 months - thats one that puts me in hospitl.
I would discuss it with your neuro before going off the medication.
Also you could look at what medications are available & if one of them suits you better.
Take care whichever way you
Hugs

JFYI -- one of the quirks of MS, seen on MRI, helps to diffeentiate MS from other diseases. MS lesions are symmetrical. This I was interested in because of prognosis. An episode that effects both sides has a poorer prognosis. It would mean its in the spine for both sides to be affected in a single attack. There is a poorer prognosis for spine lesions, as they tend to cause visible mobility issues.

So the right side of my body was affected first. Then within the year the left side of my body was affected. I tried to understand what this meant to my prognosis. Was it unusual? Does it put me into a poorer prognosis than the better one that I had before?

Then I read that MS lesions tend to be symmetrical. The fact that my right side was affected then my left side, just meant I had MS and it was progressing as normal. My prognosis was MS.

What Sue says is true. The meds only slow down MS by 30% and don't correct any damage already done. Some damage may get better. MS stand fore multiple scars. Your own body makes the scars and possibly helps the symptoms in remission. Slowing it down by 30% gives the body time to scar the lesions.

Just make sure you tell the doc as more than avonex is available and when he believes what your using is not effective for you he can change to a different med.

I refused the med that my doc recommended for 8 months. I think I had difficulty accepting I had MS and needed a med. I had those frequent relapses that Sue is living with. It's rough! It was a tough year for me! I finally started betaseron, it settled things down and convinced me I need a med to slow MS down.

I took betaseron for 2 years, it worked well relapses about a 14 months apart, then it became ineffective. It was 3 years and the changed to a new doc when my betaseron was deemed ineffective for me & I was switched to Tysabri.

FYI I originally was put on Avonex 1 yr did not work, went on copaxone for a while then tysabri came out started working then the FDA pulled it, went back on copaxone, then tysabri came back out went back on it, did not notice a difference-went back on copaxone, exact 6 months later had a bad flare up 6 days of steriods, just to be able to stand ( i am full time in a w/c) went back on tysabri now for 4 months, starting to walk and feeling less numb, now everyone is different so who knows, but maybe tysabri might do something for you... best of luck to you

Darling, sadly there is no clear answer to your question, only research indicating that the MS drugs slow the progression of MS... After being on betaseron for over 8 years, I took a 5 year break from the drugs. In that time, my MS got worse. Is it because I was not on a med??? Nobody can answer that question...

I've now been on copaxone a little over a year, and I've seen marked improvements with my MS. As you well know, everybody is different and each case has to be answered individually. After 23 years with MS, I'm just fine being on copaxone so I will continue. Side effects are minimal FOR ME unlike betaserson where I had open sores anywhere I gave a shot (yeah, for over 8 years--how fun was that???)...

Good luck in your decision whatever that may be! xoxoxo Cj (Cindyjo)

i was on avonex 4 years and i moved. i found a prominant neuro in baton rouge who sent me to a more prominant neuro in houston at the university MS center. upon viewing films of my MRI, the man said no MS, only one lesion in the brainstem and in only 20 minutes time, took away my dx AND my Avonex. i moved again in about a year and went to another prominent neuro, who specializes in MS. another MRI and their were 28 lesions, all sizes all over the place, 2 more in my brainstem. this neuro referred me to a MS research dotor at university of mississippi. she didn't understand my heart and my throat spasms being a part of this. Dr. Herndon confirmed my dx and kept me as a patient. needless to tell you, he put me back on my usual meds AND my Avonex.

i have since had some serious progrssion over the last 10 years since and because of what happened to me. with all my heart and soul, i know Avonex was helping me to begin with, it should never have been taken from me. it was proven to the FDA to slow the relapses and slow progressin of disability, the only therapy that could claim this then. i don't know about now, cause i'm still on Avonex and i'll use it til it does not work for me. in the last 10 years my MRI this year showed one new lesion.

i would cringe to think what i would be if not for Dr. Herndon and Avonex. he worked in a lab all his life and with the Avonex trials. he told me he came out of the lab with the Avonex patients.

this is "my" experience. i feel blessed to still be here, no matter the changes in my life. i have to take my shot every week. and, as far as i am... i still walk a lil'... debra

Research LDN

http://www.lowdosenaltrexone.org/

http://ms.about.com/b/2009/04/21/j...

hello sherizi,

I am not and never have been on any of the MS drugs. I've never taken steroids either.

I was diagnosed in 1995 and I am still quite ambulatory. Yesterday I was able to go 10 minutes on my treadmill.

I keep up my hope for a cure! :)

Hang in there!

I was on Avonex but topped because of the side effects. I then tried Copaxone but had to stop due to side effects. I was not on anything for a year. My doctor then told me I had secondary progressive and I was getting progressively worse, so I started Tysabri. At least the progression seems to have stopped.

no meds here and little progression... symptoms come and go

GolferGuy... Congrats you are one of the lucky ones... I was as well for 20 yrs... Then WHAMMY, it started to hit me harder... I'm still walking but need frequent rests...

I hope you all realize that we are ALL very different... In my 23+ yrs. of MS, I've been on a treatment for 9 1/2... As I get older, my MS progresses though not horrifically... Some think a cure is coming in about 10 yrs. (a doctor I've heard speak)... Let's hope so so we can put this challenge BEHIND US!!!

xo Cj