ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,378
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
It was a bit of a dis-appointment. As in, he had no magic anti-spasticity, anti-fatigue bullet. But it was also reassuring in a strange way.
The physiatrist himself was wonderful, but he did not have the answers I was looking for. My goal was to find a way to reduce night time spasticity and improve my fatigue. While it was super disappointing for me, I highly recommend seeing one if you are experiencing gait issues or pain with your spasticity. This guy was thorough. They have LOTS of options for pain and spasticity- just nothing that would immediately work for me with regards to fatigue.
I learned a fair amount about what a physiatrist does- which is look at your function and find practical ways to assist you in either improving or, at the very least managing, pain and spasticity. He didn't really care what disease I had, he just wanted to see how I moved and know what I needed to do in order to function during the day. The most surprising thing he did was elicit some pretty crazy faciculations while putting me through my paces and act surprised that my emg didn't pick up on them (sorry- DIHALS, faciculations are NOT always ALS). Then he said said maybe they were benign (which I agree with completely- NOT LMN) and wrote copious notes in his files.
He spoke to me of expectations (I have pretty high ones) and learning to live with the function I have. He wanted to know when my sleep study was (next month) and what my lung function was (need that checked). He said my fatigue was obviously some mysterious mechanism of PLS combined with the constant spastic muscle activity. He also referred me to a Feldenkrais practioner/ Osteopath to help me learn how to move with spasticity and retain whatever range of motion and strength I have. He also said cannabis was my friend and to keep trying with that (I had stopped a while ago). Because my spasticity is all over, botox is not a solution- but he indicated it can be really helpful for people with severe or painful spasticity in their large muscles because it allows surrounding muscles to settle down and relax as well.
So, while disappointing that he didn't have a magic bullet for me to make me instantly better (as in, cure my my MND), he was super reassuring and supportive. Sometimes it's nice to be told that you are doing everything right for yourself and get a pat on the back that you are working hard and it's just that the disease sucks. I will definitely go back if my spasticity increases or I am not able to deal with pain in the future.
The physiatrist himself was wonderful, but he did not have the answers I was looking for. My goal was to find a way to reduce night time spasticity and improve my fatigue. While it was super disappointing for me, I highly recommend seeing one if you are experiencing gait issues or pain with your spasticity. This guy was thorough. They have LOTS of options for pain and spasticity- just nothing that would immediately work for me with regards to fatigue.
I learned a fair amount about what a physiatrist does- which is look at your function and find practical ways to assist you in either improving or, at the very least managing, pain and spasticity. He didn't really care what disease I had, he just wanted to see how I moved and know what I needed to do in order to function during the day. The most surprising thing he did was elicit some pretty crazy faciculations while putting me through my paces and act surprised that my emg didn't pick up on them (sorry- DIHALS, faciculations are NOT always ALS). Then he said said maybe they were benign (which I agree with completely- NOT LMN) and wrote copious notes in his files.
He spoke to me of expectations (I have pretty high ones) and learning to live with the function I have. He wanted to know when my sleep study was (next month) and what my lung function was (need that checked). He said my fatigue was obviously some mysterious mechanism of PLS combined with the constant spastic muscle activity. He also referred me to a Feldenkrais practioner/ Osteopath to help me learn how to move with spasticity and retain whatever range of motion and strength I have. He also said cannabis was my friend and to keep trying with that (I had stopped a while ago). Because my spasticity is all over, botox is not a solution- but he indicated it can be really helpful for people with severe or painful spasticity in their large muscles because it allows surrounding muscles to settle down and relax as well.
So, while disappointing that he didn't have a magic bullet for me to make me instantly better (as in, cure my my MND), he was super reassuring and supportive. Sometimes it's nice to be told that you are doing everything right for yourself and get a pat on the back that you are working hard and it's just that the disease sucks. I will definitely go back if my spasticity increases or I am not able to deal with pain in the future.
