Ed340hp
Distinguished member
- Joined
- Jun 28, 2015
- Messages
- 119
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- US
- State
- California
- City
- Long Beach
I trust updates help.
I have been on the 500mg dose for two weeks. The caffeine side effects are mostly gone with no coffee. I still have a feeling of every muscle perked just below the edge of reacting or cramping like when a dry wind blows, with heightened reflex reactions, but the nervous feeling is subsiding with a peak about two hours after taking the tablets.
Twitching and cramping at night is still happening but not as severe. The disconnected feeling is not happening as often, but confidence is slow to improve.
I pedaled my recumbent indoor bicycle two miles today, with resistance pushed up at seven and dropping to three to keep my heart rate up above and then below 125 bpm. Eleven minutes. It took some work. It is helping my knees and range of motion. I may pay the price tomorrow.
I signed my name a few times today and the jitters do reveal themselves in the poor result. Fingers and thumbs do feel better with less claw cramping, but they need reprogramming.
To gain some comparison my FVC has been stable in the mid-80's for the past nine months. I take nothing else but aspirin, ibuprofen, and benedril as needed, and a daily multi vitamin. Beer or wine calms the nerves, and getting my feet elevated helps fatigue and swelling.
I just got fitted for an AFO for my right foot. I pitches my knee forward to unlock my knee. It works the quad muscle more, but I have a more natural walk without the foot slap from the toe droop. Downhill walking and taking steps need reprogramming, but it feels promising.
The family is starting a long European Vacation in a few days, with me, so hopefully the wheelchair will get pushed by me as much as ridden. Planes, trains, and buss rides, and a car planned. This will test the tirasemtiv (and our patience).
I have been on the 500mg dose for two weeks. The caffeine side effects are mostly gone with no coffee. I still have a feeling of every muscle perked just below the edge of reacting or cramping like when a dry wind blows, with heightened reflex reactions, but the nervous feeling is subsiding with a peak about two hours after taking the tablets.
Twitching and cramping at night is still happening but not as severe. The disconnected feeling is not happening as often, but confidence is slow to improve.
I pedaled my recumbent indoor bicycle two miles today, with resistance pushed up at seven and dropping to three to keep my heart rate up above and then below 125 bpm. Eleven minutes. It took some work. It is helping my knees and range of motion. I may pay the price tomorrow.
I signed my name a few times today and the jitters do reveal themselves in the poor result. Fingers and thumbs do feel better with less claw cramping, but they need reprogramming.
To gain some comparison my FVC has been stable in the mid-80's for the past nine months. I take nothing else but aspirin, ibuprofen, and benedril as needed, and a daily multi vitamin. Beer or wine calms the nerves, and getting my feet elevated helps fatigue and swelling.
I just got fitted for an AFO for my right foot. I pitches my knee forward to unlock my knee. It works the quad muscle more, but I have a more natural walk without the foot slap from the toe droop. Downhill walking and taking steps need reprogramming, but it feels promising.
The family is starting a long European Vacation in a few days, with me, so hopefully the wheelchair will get pushed by me as much as ridden. Planes, trains, and buss rides, and a car planned. This will test the tirasemtiv (and our patience).
