What my neurologist said to me today about the meth

Today was my visit to the hospital for my check up. The doc said I can think about coming off the meth in 6 months time. But he caveated it with this. I need to be in place in my life where I can cope emotionally and physically with DM if it returns when I try coming off. What a dilemma. Should I, shouldn't I, I'll have to see.

I asked him if he could tell if I am likely to not get DM return and he said my antibody profile fitted in with a groups of people who tended to not get it return, which is bloody fantastic. So i said is this concrete evidence then it wont return an if so why mention it, at which point he said that the sample size, with is being a rare disease, was small, so it is not 100% certain and after all, its all very primitive at the minute (his exact words).

Interestingly and I know this flies in the face of other peoples experiences (Maruska for sure) he said that you can't just reduce the dose and see, that it doesn't work like that, it's all or nothing, stay on or come off.

So, anyone with similar stories or contrary ones?

Hey Suze,

From what I have understood about Methotrexate, it is pretty much on par with what your Doctor said. All or nothing! And all includes Folic acid supplements. If you are tolerating it well, it might be worth consideration and a shot, just make sure if you have a problem, get into the Dr right away!

As far as discontinuing it, and it coming back, there just aren't any guarantees, but the Doctor will know the odds. I guess we all roll the dice every time we take a med or discontinue a med.

I wish you the very best, Suze!


Thanks SK, I have to think myself lucky that Im getting a chance to come off, at least, seems many of us have to stay on drugs long term, so really I should feel lucky. I will be other peoples guinea pig when I do come off and at least be able to let you know what happens (hopefully what doesn't happen!)