disease modifying drugs

[murphy01]

Hello
I have had ms for 14 years.  The first 5 were bumpy with 1-2 attacks per year and then I went into remission for 8.5 years.  I just had a recent bout of optic neuritis and my neurologist is recommending one of ABC drugs.  Is there anyone out there who is not on these drugs and managing the illness well or is it a definate that with no drugs we will all end up in a wheelchair as my neuro told me.

[Lulu54]

Almost everyone who has had MS for over 15-20 years have been without a DMD - it wasn't available back then.

I am in a class with a man who has been dx'd for 44 years, and at this point he walks with a footed cane, and that's it.

Another woman in the class has been dx'd for 22 years, and she is now using a cane, but that is a recent development.

No two people are alike with their MS, and your neuro should be ashamed of trying to force you into treatment by using scare tactics.  Education is a much better approach to understanding DMD's and how they work.

Our health pages have a lot of information - I hope yo uwill take the time to read them and come back with your quesitons for us.

welcome to our community,
Lulu

[murphy01]

Thanks for your response.  Just out of curiosity, do you happen to know many people who have had ms for years 15+ without taking drugs and how are they doing?

[Lil Bo Peep]

I have been off and on the CRABs and tysabri for ? years.  NO ONE can tell you what your particular outcome will be.  In the early 90's the school of thought was no drugs until x happened.  In early 00, school of thought was at first sign, get on copoxone.
Now tysabri is the au courant drug of choice.
I too was told I would be in a wheelchair at 19 and would just have to accept it.  My right leg was paralyzed at time.  Well, that doc lied, b/c I haven't been in a wheel chair since.

Nancy Davis of Erase MS does not take any disease modifying drugs.  She is high profile and started a foundation to include top specialists around the world to find a cure.

I think the best advice is to get as much information as you can so that you can make an informed decision on what is best for you and your family.