Oh! Thanks for the reminder!

*dashing off thank you note to H.R.H. Princess Shappy*


Really? How long had you been on it?

Wanna get a slimy lawyer?

A little short of a year, but when Neuro told me I was SP I stopped Copaxone and all other DDMDs.

Sure, but it would be hard to prove that we wouldn't have gone on to SP anyway? CARP!!!!!

That sounds like great news.

I guess if you are this far into SPMS, they wouldn't expect enhancing lesions any more . . . but no black holes or more permanent lesions sounds GREAT!

Have you lost any functionality over this two (X) years in SPMS?

Cherie

Good to hear Cin. Jim's was unchanged too but those darn symptoms keep a coming don't they?

Call your lawyers! I smell a hefty payout!

Cherie,

I don't understand your statement that SPMS people will no longer have enhancing lesions on a brain MRI. If the person is stable, or on a plateau, the MRI will not show enhancement because they are not progressing. But active lesions I thought would still enhance if a person is progressing even if SPMS.

Did I miss Radiology 101? (kidding) Just curious about your statement.

Cindy, for what it's worth - my neuro asked me why I prefer not to use a DMD and I told him I was concerned a DMD would cause more problems than it would solve.

He sat back and said he found my answer interesting. He had gone to a medical convention where one of the speakers said there is a possibility the DMDs could be making those with MS worse not better

Is that what has happened to you?

That's great news!

I am on C and just got the same report you did - no changes in 2 years. But that was only on my brain MRI. They didn't do the spine (c and T) this year.

I mentioned that because I have both the reports and quite honestly, they are almost identical with the exception of a slight change in one of the lesions. They have standard statements that they use and the transcriptionists pull it up and put it in the report. It makes you wonder, huh.

Anyhow, I hope that continues for you. Whatever you are doing, keep it up as it is obviously working for you.

My (newer) neuro recently asked me the same question, Snoopy. I told her that while the CRABs may reduce relapses by 30%, IMHO long-term studies have not proven them sufficiently effective in the longer run, for the majority of people.

She said "you know why?", "because they can't track down enough patients to show one way or another".

I said "exactly!". Given that those people are ALL provided free drugs to stay in the long-term studies, if they were effective, wouldn't there be a ton of people they could easily track down to see how they are doing?

I do think they are potentially effective (and tolerable) for a minority of patients . . . and when they seem to be, those patients should probably stay on them. Guaging efficacy can be difficult too though ...

Interesting that they think they might be making some people worse though. I wonder how they guage that? I know that people with Devic's/NMO are supposed to completely avoid DMD's . . . which is a good reason to be NMO-IgG tested if a person has large spinal lesions. (I'm going for a test soon ....)

Cherie

Raising hand to Snoopy...may I answer that question? Yes I believe that the DMDs may have made my MS advance faster..

I remember AMN complaining of getting worse, while using Copaxone and I believe that's why she stopped it?