Baclofin 20+ years.

[Lhallgrigsby]

Baclofin helps 100% I can't imagine life without it. However, I'm at the high end of dosage and will have to go to the Baclofin pump. 37 years with MS and things go down hill with age.

[bxrmom]

I'm sorry to hear that. I know there are others on the group that have a pump and I'm sure they can fill you in on the pros/cons of it. My new neuro didn't want to up my dose of Baclofin, so he lowered the dose but said I could take it more frequently throughout the day. I wonder if that wold be an option for you? Please keep us updated how it goes.

[rjoneslaw]

Sorry 2 hear that

[jimeka]

It’s good to hear that Baclofin helps so much, thank you for sharing, sorry that it is not so efficient now. Maybe your body just needs a break from it. 😊

[zenhead]

I've had a baclofen pump for a few years. Downside is having to get it refilled every few months, not a big deal but occasionally inconvenient. I still get muscle spasms, but my neuros say that if I increase the dose it might not knock them out, and I will likely lose muscle tone and be unable to stand/transfer. It's just something to live with.

[kwhompus]

keep on keeping on!

[Neworleanslady]

My doctor told me that sometimes, although not necessarily most of the time, agressiveness of MS progression slows with age. I’ve got my hopes and prayers on that although I’m keeping my expectations low

[goatgal in reply to Neworleanslady]

There may be truth in that. I had my last true relapses in my late 60s, none in my 70s, none in the last two years. I also have no new lesions despite never being prescribed a DMT. However, my gait continues a slow and steady decline, my fatigue is more present, and I have frequent and varied other pseudo exacerbations (i.e. symptoms that don't last long enough to be termed a flare or exacerbation).

[Cutefreckles72 in reply to Neworleanslady]

Hi Neworleanslady, I hope the doctor is right about the aggressiveness of MS slowing down with age. I am in my late forties with Primary Progressive MS and it is slowing me down now. My walking and balance is gone. I am praying with you. Lets keep hope alive.

[KarenUSA]

I’ve had MS for 30+ years and a pump for 10 years. It has kept me mobile without the side effects from oral baclofen. Yes, my gait is slow and balance is awful, but I get around with a walker. I don’t regret having it.

[starlight5]

I'm glad baclofen has been so helpful for you. The pump may be even better as it will be a much smaller dose with less side effects.

[Neworleanslady]

Less side effects such as weakness?

[Rubybegonia]

I have a baclofen pump that helps a lot with the spasms in my legs. I was diagnosed with MS 33 yrs ago at the age of 43. I've had the pump for going on 8 years and have no complaints at all. The high amount of oral baclofen I was taking really affected my whole body, the pump just affects my legs.

[Cutefreckles72 in reply to Rubybegonia]

Hi, I've been reading about the Baclofen pump. The pump looks big online. Is it one or two surgeries for the pump? I have muscle spasms in both of my legs and it is driving me crazy.

[Rubybegonia in reply to Cutefreckles72]

The surgery is just once. It made a world of difference in the spasms in my legs. It takes a little while to get the dosage squared away but sure worth it. Good luck! Feel free to ask me any questions.

[Cutefreckles72 in reply to Rubybegonia]

ok thank you. Just thinking about it. I am use to walking now I have to use a electric mobility scooter to get around.

[Rubybegonia in reply to Cutefreckles72]

The spasms in my legs woke me up, I couldn't sleep. I was at the limit for oral baclofen plus that it really messed with the rest of me.