I forgot to mention Jim takes 24 mgs of tiz a day. 8mg's 3x a day. Maybe the higher dose would be best for you? Maybe your doc will up it?

I take a combo of Klonipin and Baclofen. It has helped but I have days that are still really bad, too. Spasticity has been my nightmare sx for quite a long time. It even affected my walking quite profoundly. You saw me walk before they got the Baclofen up to a good level and you've seen me since so you could definitely see the before and after.

I still have problems sitting, standing, walking for extended periods. I wake up a lot at night unless I take enough Baclofen and Klonipin. It still sucks, but it is better than before.

One thing that really helps me is getting a really good hour long Swedish massage. It hurts at first, but everything released and I could cut back on drugs for awhile. That reminds me, I need a massage again soon!

I do hope things turn around for you soon. I hope you can get the Tysabri and get past all of this crap!!!

I'm so sorry to hear about the level of pain you're in...and the lack of relief. I hope that you can get some kind of relief soon, because you sound over the edge with this disease...
makes me empathize more with those MS patients who used Dr. Kevorkian...I never understood why an MS patient would want his services until I experienced the sxs from it...now I get it.

Keep letting your doc know what's going on...and that you need relief now...:hug::hug:

((((((((Gazzy)))))))) Feel better soon..:(

Sandy, maybe a higher dose would help. I took another 4 mg extra again last night and it helped. Maybe I can mention it to my doc and see what he says.

Holly, you're right. I did see the before/after walk with you. It did make a difference when they finally got the med combo figured out. And I know how frustrating it still is for you. Thx for listening to me when I've whined to you. :hug:

Tried calling my regular doc yesterday early to see if there wasn't a pain med that I could get that might last longer than the oxycodone. They didn't have any klonipin samples--I asked. Never got a call back and I even checked to see if the dr had responded to the note right before the office closed. :(

Deb, I get Kevorkian too. That's what scares me.

Thx, Sally. I hope so.

I really doubt any doc would have samples of klonipin because it is such an old drug and has been generic for years. The pharmas wouldn't have any incentive to give out samples.

Can I ask a stupid question? Can you always tell if the pain is spasticity? I can tell when it's my back/neck, but I'm never sure with my legs. They just don't hurt the same way. The back gets so locked up it feels like one solid bone lol.
The legs don't get like that, stiff a little,but not anywhere near like the spine.

When I had nerve pain it was pretty consistent and wouldn't go away. It stayed in one spot, so it was predictable. But I'm getting muscle spasms and the pain's accompanying them. It goes away if I don't have the spasms and it's just like a normal muscle spasm--starts out where you know you're getting one and builds in a wave. That's when the pain really starts. It's also a bone-deep pain sometimes where it feels like the muscles want to rip away from the bone.

I had been on neurontin before but it didn't help and by then I was up to almost 900 mg a day. The max I've ever been on neurontin was 2400 mg a day. That was back in 2003. My neuro and I discontinued the neurontin as it wasn't helping with any of my symptoms--not decreasing anything at all even slightly. The neuro definitely feels that the pain's related to spasticity rather than nerve pain.

So I didn't really answer your question. My guess would be that no, you really can't always tell if it's nerve or spasticity pain. I suppose you have to rule out one or the other by trying different drugs.

Other than that, Mrs. Lincoln, how was the play?

(Love your tag line, Brain!)

Gaz, we don't have enough experience yet but Jim's been getting Botox in his legs for spasms. He's had one treatment so far but it did help and lasted about two months. He's due for his second treatment on the 27th and I can update how he feels afterward. His legs spaz so bad they draw up and cross over. After Botox they stopped doing that completely.

With my back, it feels like slowly tightening tightening tightening until nothing wants to move. It stays like that sometimes days, sometimes longer. Sometimes even pulls the ribcage tight so it sort of constricts my breathing.

But it's slow slow slow, not like clench let go, just getting more tight like tuning a thousand piano strings at once, all over my back.

With the legs, not like that, more like RLS then it aches. Not nerve pain that I can figure. But I don't know what else to call it. My legs get a little stiff but the back , you can see it's locked up.

My neck is so bad, we always use that old Steve Martin line - " When I walk into a restaurant, every head turns except mine cuz I have no neck!"