ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,348
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
I have a few questions with regards to PLS. I know I have a few years to go before actual diagnosis, but I've been told to assume till the specialist tells me otherwise. This is a bit of a ramble- please bear with me.
I have recently discovered Baclofen had made my spasticity worse. The neurologist had been concerned with how quickly I had progressed (his experience with PLS was it was very gradual) and how baclofen just wasn't working to keep up. It was recommended I gradually reduce my dosage from 80mg daily to 20mg, and then add Tizanidine to see if that helped. Well, as soon as I started reducing the baclofen, my daytime spasticity became less noticeable. The brain fog went- I also was able to focus on more than just being tired and wobbly. It changed from constant moderate/severe spasticity to just episodes of moderate spasticity throughout the day. Night time spasticity became more painful and severe, weirdly enough. I have now completely cut the baclofen out, but am wondering if anyone else got worse with baclofen? Is Tizanidine similar? I feel like just sticking to mmj at night and soldiering through the day.
For those who have suffered with PLS for a while- how do you carry on? It seems like everything has just narrowed down to symptoms, managing medication, fostering energy and worrying about whether I have 20 years of profound debility and how I'm going to deal with it. How have you dealt with the profound fatigue and the unknown progression? I've been offered yet more drugs to manage mood, with the idea that my constant fatigue is depression, but with how I've responded to Baclofen, I have my doubts about throwing more chemicals at my body. Seems more like they're more a distraction than actual help. I can not imagine moving through my remaining years in a complete fog of drugs to deal with spasticity, pain, mood, etc, etc. For those who have a few years on me, how do you move/carry on? When does it stop feeling so new?
I have recently discovered Baclofen had made my spasticity worse. The neurologist had been concerned with how quickly I had progressed (his experience with PLS was it was very gradual) and how baclofen just wasn't working to keep up. It was recommended I gradually reduce my dosage from 80mg daily to 20mg, and then add Tizanidine to see if that helped. Well, as soon as I started reducing the baclofen, my daytime spasticity became less noticeable. The brain fog went- I also was able to focus on more than just being tired and wobbly. It changed from constant moderate/severe spasticity to just episodes of moderate spasticity throughout the day. Night time spasticity became more painful and severe, weirdly enough. I have now completely cut the baclofen out, but am wondering if anyone else got worse with baclofen? Is Tizanidine similar? I feel like just sticking to mmj at night and soldiering through the day.
For those who have suffered with PLS for a while- how do you carry on? It seems like everything has just narrowed down to symptoms, managing medication, fostering energy and worrying about whether I have 20 years of profound debility and how I'm going to deal with it. How have you dealt with the profound fatigue and the unknown progression? I've been offered yet more drugs to manage mood, with the idea that my constant fatigue is depression, but with how I've responded to Baclofen, I have my doubts about throwing more chemicals at my body. Seems more like they're more a distraction than actual help. I can not imagine moving through my remaining years in a complete fog of drugs to deal with spasticity, pain, mood, etc, etc. For those who have a few years on me, how do you move/carry on? When does it stop feeling so new?