JUST LEFT NEURO'S OFFICE GOT WHAT I EXPECTED

[Waydwnsouth1]

I saw my Neuro this morning and things went just as I expected. He took me off my DMD as it clearly wasn't working. That was my fourth and final DMD. There is still Tysabri out there but since I tested positive for JCV neither one of us are wiling to take the chance of me trying it.

I explained to him that all I want to do is sleep. I have also been very moody and have had to bite my tongue before I jump down someone's throat over virtually nothing. I have also been depressed lately. He told me some of it has to do with my MS and some it has to do with my reaction to Gilenya.

We had a long talk, as we usually do, he wrote me a rx for a wheelchair and I left.

I have to say that I'm a bit relieved to be off the DMD because I feeling so bad while I was on it. But on the other hand, I'm flying blind letting my MS progress as it will. However, if you think about it if none of the DMDS were working anyway I was pretty much flying blind all along.

How many out there aren't on a DMD and how have you been doing? I could use a little positive reinforcement.

[hunterd]

I have not been on a DMD for three years, but I am primary progressive, so that throws a curveball into the mix.

[SNOOPY]

I have been diagnosed for 30 years and have never used a DMD.

I am doing relatively well considering the length of years I have lived with MS. Unless you knew me you wouldn't think anything is wrong with me. My husband sees and knows the effects the disease has on me.

[palmtree]

I'm a big fan of a Tysabri because it has very few side effects, it's only once a month and it works the best of any DMD. There is always the risk of PML but it is very minimal and not being on a DMD means 100% chance of MS progression.

The downside is the constant worry.

Now, fortunately, we have Lemtrada.

[JerryD]

It's very interesting that your neurologist isn't pushing you toward a DMD. But. if you have already tried several of them, and they didn't show any efficacy, then you haven't got much left to use for treating this MonSter. Sorry, that you are in this predicament.

[marti]

I was dx in 2001 and put on Copaxone for years. Started to have weird reactions to it and was taken off completely. Neuro said it was not doing me any good ( do any of them? ) and she did not offer anything else. Her philosophy was to do no harm. So I'm just taking meds as needed for pain etc. Very expensive medication that does nothing. Or next to nothing.

I'm not in terrible shape. At least not from my MS. I have other problems that are worse now. So.... we go on.

[Karenkay]

I was diagnosed in 1989 and am not on any dmd. These last few years have been the harder for me, in that my walking has gotten worse. I've tried ampura with no results, good or bad. Just nothing.

In the early 2000's, I was on Rebif for 1 1/2 yrs then on Copaxane for same amount of time. The side effects of the drug was worse than coping with the disease.

I will not go back to a dmd, anyways ... Dr has labeled me spms.

I'm doing ok, my attitude suffers sometimes but then I get a better one and move on to the next day.