Meeting with the Neuro Tomorrow
 

Well tomorrow, I'm off the the MS clinic to meet with my neuro. He's filling out my assessment to send to Vancouver because he's Rx'd me a Baclofen pump:D I'm excited and nervous about this whole thing all at the same time.

I'll check in after I get back to let you know how it goes for me:o

Blessings,

Good luck weeble! :hug: Let us know how it goes :)

Wow, you are first person I've heard that is excited about getting the pump in. :eek: I totally understand why you would be (been there, done that kind of pain), but you sure have a great attitude about this new adjustment you are undertaking. :)

Good luck and let us know what the plan is. Will you have to wait long for the implant?

Cherie

good luck weeb.
let us know what happens.

I'd be very interested to see how you make out. I've never posted before and registered today just to reply!

I am waiting on my insurance approval for my doctor to do the trial to have the same procedure myself. I too am exited and nervous at the same time so I know exactly how you feel! :)

Hope to hear from you soon. Thanks!

Hi!

I registered this morning just to reply to this. I too am interested to hear how it went. I hope it was positive for you!

I am waitin on insurance approval to have the trial for the pump myself. I am also excited and nervous at the same time so understand those feelings exactly. :) I am so tired of taking all of this oral Baclofen (80mgs/day) and having it barely work at all..

Anyway, I hope it went well and you let us know soon!

Take care.

Hey Weebs! Any news yet?? What's the scoop? Hope things went well at your appt, and just wondering how you are.

take care.

Thanks guys, the application was straight forward. He basically confirmed that my spasticity is chronic and progressive and wrote down drugs I've tried and am currently on for spasticity. I also had to say what I am physically doing to help with spasticity. (1 hour massage and 1 1/2 hours PT every week plus DH stretching me at home).

We also discussed possible treatments for me based on the outcome of my MRI on Wed Sept 3rd.

I'll let you know when I hear from the "pump people".

Sending you good vibes that you can get some relief too!

((((((((Weebles))))))))

I hope your new pump works wonder for you. Let us know how it goes..:)

Change Of Plans
 

Well, it looks like there's not going to be a baclofen pump for me any time soon. Just got my latest MRI results and there's been a lot of progression despite Rebif and Tysabri. I'm starting my Novantrone work-up tomorrow.

The plan is to have my muga scan to get my heart approved, have a portacath inserted (bad IV history) and get going on Novantrone ASAP.

My neuro intends to do 5 infusions, 3 months apart and follow-up with Copaxone in the end. I hope this works to stop my progression for a while.

Sorry to hear about the progression, weeble. :(

Novantrone, eh? I have heard some people say that this has really helped them a lot during the process of taking it. I hope you are a candidate, and it works for you too.

Did you happen to mention Revimmune/HiCy to your neuro? I don't know if our medical system would pay to have the procedure in the US, but it seems like it might be a very good option for you . . .?

Cherie

sorry for the turn of events weeb.

i hope the new drug will benefit you and turn things around.
wishing you con't good healing thoughts and prayers.

blood work is all good, and passed my MUGA scan (heart study) today with flying colors. Now to wait for my portacath.

No Cherie, I'm not a good candidate for HYCY because I don't have much inflammatory activity (only 1 questionably enhancing lesion) on my MRI:Dunno:. Same as the ASCT in Ottawa. Not great success rates without the right looking MRI.

Wow, Weebs, navatrone..Yuck, Yuck. It has worked for some peeps, though, but please know that there are some bad side effects that go with it. It's one of those meds, that, you have to weigh the benefits against the possible dangers.

I hope it is the right decision for you, and my best wishes..:hug::hug::hug:

Thanks Sally. I've always been one to do my homework. I am very aware of the risk of opportunistic infection, heart failure, liver damage, leukemia, and lymphoma. Unfortunately, the problems I'm having with my brainstem lesions outweigh these risks. I certainly wish this could just all go away, but that's just not happening.

Thanks so much for all those :hug: I'll keep you posted as my chemo nears, probably near end of October.

Weeble,
I don't think there's one treatment that comes without a risk. Shoot. my daily meds. have written protocols with "mights", thay scared me to death first time I read them. We all know people that did Novantrone with great results, some who couldn't. Like everything in this carppy disease, you never know until you try. You gotta try. Good luck and Go-Girl.

Many people have had good results with Novantrone. Jim didn't but that was because it was so new there wasn't much information as far as side effects go. Just one to mention is UTI's. Jim was in kidney failure one month after his first infusion. It could have been avoided, we think, if they had noticed that the pain, swelling and fevers were from a UTI, not ms. He was being treated for a ms exacerbation when it should have been for a UTI. Just a heads up for you. Like Kicker said, all drugs have side effects.

I was all excited about the pump. Jim's spasms are terrible and he's mentioned the pump recently.

Good luck and let us know how you do. :hug: