Hi Bill, Cellcept is a chemo suppressing the immune system. I, perhaps ignorantly, thought that meant it is a disease modifying drug. Although used off label for MS, it has been much more effective for me than Avonex or Rebif.

Riverwild, I hope kidney and sleep issues resolve quickly.

-Susan

(((((River))))) Dam meds...why can't they help everyone the same..:mad: I know we're all different, but shoot, our bodies are certainly close to similar enough. I just don't understand, how we differ so much, when it comes to meds..:(

I'm so sorry if this doesn't work for you..:hug:

I know you think you're Superchick. but sleep inside in your nice warm bed and for heavens sake stay out of the rain, heat and cold...Idiot!:D

[QUOTE=SallyC;699881](((((River))))) Dam meds...why can't they help everyone the same..:mad: I know we're all different, but shoot, our bodies are certainly close to similar enough. I just don't understand, how we differ so much, when it comes to meds..:(

You are so right, Sally. Ewizabeth said A increased her fatigue. For me it is better than any fatigue medication I've ever done. Once again demonstrating how the same drug affects us all differently. So many variables, so little time. :(

Can i smack you now? It probably wouldn't do any good but consider it coming! Good luck with the trial!

:hug:

OK, it wasn't a kidney! It was sleep. Who'd have thunk it with me??:p
It's hard to say whether this is working for me or not.

I am on the go so much anyway, and I am not sure if it is helping or I am just motivated. I am dealing with an upcoming wedding (the DSD is getting married this coming Sunday!), the man's ex-who is trying to drive everyone as crazy as she is, and MORE changes at work.

I'm going to hang for a month and then if I can't tell if there's been a benefit, I will go off it. I figure that if it is working I will be able to tell then!

I still need to learn how to listen to what my body tells me! I've never been good at it! I envy people who can say that they notice this or that. For so many years I just worked through the pain or shrugged off piddly stuff (or what I thought was piddly stuff!) that I tend to dismiss stuff until it knocks me down. (Don't forget I am the girl who had a ruptured appendix for 24-48 hours before I figured out I was going to die and I went to the ER!)

My new mantra is "You are NOT Superwoman!"

Your not? Way to kill my buzz.

Maybe it is helping? I was certain it was making me feel worse. I could tell in about a week's time.

Ok, here's my take on Ampyra.

It is helping me. It took me awhile to get on the ball and figure out a way to evaluate it. This is not scientific, just my take!

I walked in heels for four hours for the DSD's wedding. First time in years I wore heels and I shed them asap but I walked in them! (I have to qualify this- They fit when I put them on the first time, but when I put them on with nylons, I was a-slippin' and a-slidin', which didn't make it look graceful at ALL! It was more of a "mincing" or a "prancing" than a walk but I survived!)

I get up from a seated position without making "that" noise now. I'm not using the arms of chairs to lever myself up anymore, my legs are doing the work. I still want a toilet that is higher than "chair height" (BTW, that's a freakin' lie, yanno! Chair seats should be three feet off the ground!) but I get up without doing the 1-2-THREE! I find myself leaping out of chairs now- at least higher chairs!

It doesn't do a darned thing for spasticity for me. I'm still stiff and spazzy but it doesn't stop me from pretending that I'm not.

I go further, faster. I hear that's what it's supposed to do, so I guess it's working.

I haven't had any other sides. I forget to take it on time but I've developed a rule. I take my meds now as soon as I get home from work at 7:30 a.m. and again after supper. I'm getting better at it, but still forget sometimes and have to adjust the whole schedule when I forget, since you're not supposed to take them closer than 12 hours apart. I've taken them as close as ten hours apart and haven't had any adverse effect but I don't push it. I haven't had a seizure yet!

I have to drink more water. I'm floating away. The side effect of UTI's scares me. After the one and only that I had, I don't want a repeat, so I am the water carrier! I have a water bottle permanently attached to my hand now. They're like purses, I have a different one for every day! It doesn't hurt but I am getting to the point that I hate water...:p...and bathrooms with short toilets!

I am sure now that none of this is wishful thinkng, so I am going to stick with it for now!

I used 4AP. no results at all. no stomach problems and no response.

Saw the doc yesterday, did the timed walk, told I was faster than any others on Ampyra in his office, I could have run down that hallway, I just wanted to go home to bed in a bad way after only two hours sleep since the day before.

For those of you who have nosy insurance company with an equally nosy specialty pharmacy...the freaking BigBrother pharmacy called him and ratted me out for not ordering Ampyra when it was prescribed! I was enraged by this news.

I told him I made my own arrangement so I could try it first before I ordered and paid a huge copay. He laughed and said he told them that I probably took care of it on my own and would order when I was ready and that he didn't want to hear from them again.

My mission for today is to call the specialty pharmacy and ream out a few people and then place my order...:D..since i am staying on Ampyra!

Anyone else had this lovely intrusion into their privacy from a pharmacy???