ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,348
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
Hello-
I had my first ALS clinic appointment yesterday. It was very overwhelming and made me cry, I won't lie. I have to admit though, it wasn't terribly informative about my personal progress, nor did they seem to be able to give me any idea of what to expect over the next little while. Only that they would see me in 4 months to assess again.
I seem to have confounded the physio about how to help me with my symptoms. My spasticity and cramping is increased by even the smallest movements or effort. The physio spoke to me about botox injections in some of the worst affected muscles. As I've only been spastic for 7 months, I would think that's a drastic first step, as I have, hopefully, many years ahead of me and botox's effectiveness wears off if used too much.
There were a few other things they spoke to me about with regards to where to get information, signing up with the ALS Association, lending closet, getting a pwc, etc.
What they did let me know in detail, however, was about drugs that are available.
So far, the previously prescribed baclofen will be reduced a bit (I'm taking the max dose and it is either no longer able to keep up with the spasticity, or I am desensitised to it). I have also been prescribed tizanidine, sertraline and lamotrigine- for spasticity and, it would seem, possible anxiety at night. The nurse also mentioned ativan or the like to actually help me sleep (physical discomfort is keeping me awake). This seems like a huge amount of drugs to dump in my system on a daily basis. I'm a clean eater and have always shied away from all drugs in the past. Is this type of drug load normal? It seems like overkill to me. My poor liver. And what about interactions between so many drugs all at once? I take quinine and vit D as well. So I will practically rattle as I stagger around after taking all of these.
What are others' experience with PLS and the drugs prescribed? Anything effective for you? Anything that is a waste of time?
I had my first ALS clinic appointment yesterday. It was very overwhelming and made me cry, I won't lie. I have to admit though, it wasn't terribly informative about my personal progress, nor did they seem to be able to give me any idea of what to expect over the next little while. Only that they would see me in 4 months to assess again.
I seem to have confounded the physio about how to help me with my symptoms. My spasticity and cramping is increased by even the smallest movements or effort. The physio spoke to me about botox injections in some of the worst affected muscles. As I've only been spastic for 7 months, I would think that's a drastic first step, as I have, hopefully, many years ahead of me and botox's effectiveness wears off if used too much.
There were a few other things they spoke to me about with regards to where to get information, signing up with the ALS Association, lending closet, getting a pwc, etc.
What they did let me know in detail, however, was about drugs that are available.
So far, the previously prescribed baclofen will be reduced a bit (I'm taking the max dose and it is either no longer able to keep up with the spasticity, or I am desensitised to it). I have also been prescribed tizanidine, sertraline and lamotrigine- for spasticity and, it would seem, possible anxiety at night. The nurse also mentioned ativan or the like to actually help me sleep (physical discomfort is keeping me awake). This seems like a huge amount of drugs to dump in my system on a daily basis. I'm a clean eater and have always shied away from all drugs in the past. Is this type of drug load normal? It seems like overkill to me. My poor liver. And what about interactions between so many drugs all at once? I take quinine and vit D as well. So I will practically rattle as I stagger around after taking all of these.
What are others' experience with PLS and the drugs prescribed? Anything effective for you? Anything that is a waste of time?