This is going to take a bit to write because I’m slow and need to use a WORD document for it to make sense, but I want to share my experiences with Baclofen and the pump.

Baclofen works for most of the spasticity that I get, but not too well for the HUG. I’ve had a couple of rounds with TM, so maybe that makes a difference. Around 40 mg. is my usual daily dose, but I’ve doubled that when things are nasty; especially with night spasms. My doc says that dose isn’t an issue if it is increased over time because the body can develop a tolerance to it. I try to take drug holidays as much as possible, where I decrease the dose and just cope with the symptoms for a couple of weeks so that lower doses will work again.

Maybe your body has become tolerant to the current dose of 30 mg and it might be worth checking with your doc about increasing it. I’m also from Canada so know what you are talking about with respect to access to medical care. That limited access might be an issue if you decide to get a pump. It was one of the reasons that I chose not to get it as the closest hospital that has the equipment and the docs who know how to program the pump are a 90 minute drive away from where I live. If something were to go wrong with the pump, that 2 hours or so to get care is too risky and could prove fatal if care is delayed.

I’ve had a few spinal infusions of Baclofen because when I was tested for the pump, it did work to relieve the spasticity. Spinal infusions are not standard forms of treatment but because I’m allergic to many drugs, including the opiates, that method is a last resort to get things under control when nothing else works and the body is going into shock. This body of mine has other issues that complicate dealing with the MS.

I decided against getting the pump even though the spinal infusions worked for a few reasons. Because of its size and my small body, I’m an iffy candidate, as it might get in the way of digestive function, which is also an issue for me. The pump is installed under the skin of the belly and there isn’t much of one on me so it would take up the better part of the area between the navel and the pubic bone. Pressure in that area can set off the digestive issue that I’ve also been blessed with and having a pump that is 3 inches in diameter and 2 inches thick sitting there would probably do that.

Since being tested for the pump, I’ve also found out that I’m electro-magnetically sensitive, so having a wireless device, like the Baclofen pump, inside my body could make symptoms worse. Exposure to things like cell phones, wireless computers and the myriad of wireless technologies in stores, hospitals and the like all make my symptoms worse, so I avoid being exposed to them. I have an electro-magnetic shielding blanket for when I need to be in hospital to keep exposure to a minimum.

Having said all that, it might be worth checking into getting a pump in your situation. Testing and installation involves a couple of days in hospital. First an infusion is done to see if it is effective and if it is, then the pump and line into the spinal canal is installed. The correct dose is calculated and programed into the pump. Once you are past the observation period and everything is stable, you will need to go back in every month or so to get the drug reloaded into the pump and to have the pump reprogrammed.

Hope that this helps.
With love, Erika