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    Baclofen Pump

    I have the pump going on six year my dosage is very low I need to up the dosage but I get weak my question is will the weakness eventually go away when my body gets used to the baclofen thanks

    #2
    Hi DebRA,

    In my experience, no. PT might be able to help.

    I hesitated going up for years as well. Now that I'm wheelchair bound, it doesn't really matter, and have it had increased significantly.

    Best of luck. I know the tradeoffs aren't always the best.
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

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      #3
      You're muscles are only so strong and the only physical therapy/working out can help improve your strength. It sounds like you are using some of the rigidity/spasticity to take the place of missing strength.

      I would encourage you to get with a personal trainer or physical therapist and start an exercise program. I'm not saying it will be fun or easy, but it's the only way to make strength gains.

      I wish you well...

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        #4
        I've had my pump since 2011, replaced once and a couple other pump surgeries for revisions due to catheter coming out of the thecal space, and the pocket having to be resituated when my pump decided to go on walkabout in my lower abdomen.

        I have always said that the pump is the single best decision I was able to make in my journey with MS (symptoms since 1996, diagnosed in 2001.)

        My dosage was set at 50 mcg to begin with...now all these years later I'm up to 600+ mcg. What has happened for me as my MS has progressed is that upping the dose seems to be needed more often now. The verdict's out as to why the needed increases are required.

        I have a physiatrist who manages my pump and she believes my spasticity follows my disease progression or circumstances in/with my body that cause increased spasticity. Lately I've had to have more increases than normal. The baclofen dosage will seem to give me relieved spasticity, but within a month or so, things start to stiffen up again, and when my feet start shuffling and I can't lift my foot more than an inch or so off the ground, I go in and let her "up my pump" (always feel like a SNL scene of Hans and Franz when I ask for that.) She's always cautious if I have a couple increases with only limited relief, so at that point I get a dye test. But I've never had a dye test come back with the pump being the problem...that's a blessing.) The most recent episodes of needed more "ups" than normal was after I had been in the hospital for 6 days, and there were a lot of tests, and doctors appointments post discharge. She believes the stress on my body just causes my spasticity to ramp up.

        My pain doc (who is also a physiatrist, but specializes in epidurals under fluoroscopy and trigger point injections, sub q shots into muscle bands) thinks that the increase in spasticity is due to tolerence. He's fairly new to my "doctor entourage" and does a great job reducing pain, but I tend to agree with my longstanding pump doctor. It make sense why sometimes I can make the entire time between refills without an "up" and then other times, I need it more often.

        I also take oral baclofen 10mg 3 x a day for upper body spasticity. The upper body spasticity hit the symptoms "list" a few years ago, and since my catheter is at T9...this helps with any rise in spasticity I have that is about that vertebra.

        One thing my physiatrist has stressed over the years is the need to leave some spasticity in my legs, especially my quads. This helps me with standing up from a seated position. I have severe neuromuscular scoliosis now, and lean so much to the right that I can't handle too much walking, due to proprioception being hard while bent to the side. But my legs feel strong even though I can't walk too far due to pure logistics. I use a power chair for any length of walking might be required, even in my house.

        As far as exercise helping or getting used to the baclofen making it feel weaker, I know my arms and legs are weaker than they once were but I still try to use them because I do think I can retain some strength in them even though it might not be the original strength I had. As is usual with MS, I have one side that is stronger than my other side. I use my arms to help me get up and down out of bed, or to scoot myself into position in my bed, and as I said I use my legs to walk short distances like to the bathroom, or living room.

        The thing that's so great about the pump is that if you up the pump and notice weakness that you can't get a handle on, you can just have the doctor wave the "magic wand" over the pump and abracadabra, the dose can be lessened. That and the "test drive" of the pump when being originally tested to see if it might help make for a wonderful piece of technology that has kept me walking when it looked like I was not going to have that ability much longer back in 2011.

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