Untreated MS

[rsinger]

Since I was diagnosed in May of 2012 with mild MS I have been on copaxone for 5 months and gilenya for 3 months. Unfortunately these two medications were a problem for me. I am waiting to see my neuro in Oct. to discuss treatment. I have been essentially untreated since symptoms of bilateral tingling of legs appeared in 2009. Anyone else out there untreated? Would love to hear about your situation.

[SNOOPY]

Hi rsinger,

I have been diagnosed with MS for 28 years with symptoms that go back to childhood.

I have never used a Disease Modifying Drug (DMD) and I have no plans to start.

Best wishes...

[BigA]

There are two schools of thought on the matter

1) Wait and see how you progress or not. This is favored by the Mayo Clinic and people who are reluctant to take strong meds which have their own small, but real dangers and heavy but not dangerous side effects.

2) The first years are very important for the remainder of your life. This followup of the participants in the original interferon trials showed that those who got placebo and started their meds 2 years later died earlier, man of MS related causes.

http://www.ncbi.nlm.nih.gov/pubmed/23204140

[Jules A]

Mild MS is not the best choice of terms imo. It is only mild until it isn't and I haven't seen evidence that there is any way to reliably predict our long term prognosis.

I prefer to treat my MS but if I had major side effects from all of the different choices I would likely stop treatment. I'm not convinced the efficacy is all that impressive for any of them but I am also too afraid not to at least try the medications we have available in an effort to hopefully stave off progression.

[rsinger]

untreated MS

I agree with you. I don't like the term"mild" MS. It is so unpredictable. One never knows when and how it will present itself. I would rather be on treatment. Seems safer to some extent. May be trying Tecfidera next.

[Thinkimjob]

I thought I'd read (somewhere) that being treated with Beta in the first five years had positive results.
Thanks for posting the link BigA (and good to see you back).

Mind you, I took the stuff for five years, starting maybe a week after diagnosis, and if I'm doing better than I would have, I'd hate to imagine where I'd be. But that might have nothing to do with the dmds and everything to do with luck.

I had to stop Beta because it gave me neutropenia, and while it may have helped with the MS, it stuffed up those first five years in other ways because I felt like I had the flu pretty much all the time.

I was too tired to do all the things I could still do.

Now I can't walk further than 50 yards, I have no balance at all, various numb fingers and completely numb feet. I can still move everything, but that's not particularly helpful given I don't have the strength or energy to do very much.

I'm on Copaxone, for all the good it's doing.

You'll read about people who've had MS for decades every now and then who are running marathons and basically feel fine.

They're in the tiny minority we all fondly imagine we'll always be part of. It's a hope that keeps you sane. I really thought I had fairly mild MS. There's a fond belief gone forever.

I've had this sucker for 15 years, and the last three or four have been downhill all the way.