ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,346
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
Aside from my spasticity, my absolute main issue is soul destroying fatigue. Actually, I am at the stage where I could even handle increased spasticity if I had any sort of energy. I have tried increasing sleep, various dietary supplements, massive amounts of iv VitB, changing my diet, increased caffeine intake, reducing caffeine intake, more rest, less rest, exercise, chiro, osteo, massage, accupuncture, a couple different antidepressant meds, Ritalin, Provigil, reducing spasticity medication, changing spasticity medication, etc, etc. nothing has worked in ANY way. I joked with my doctor that I was so desperate, I would be happy to take speed- at which point, with zero humour, he said there were some situations where amphetamines were called for, such as mine.
I would like to be able to enjoy what function I do have, while I still can. But I am not able to do anything more than sit and stare at a wall. My lack of energy even affects my concentration- to the point where I am unable to manage more than a page or so of a book before losing focus.
I am very fortunate that I have two doctors who are very open to finding out what others with MND have found success with when it comes to fatigue busting medicine. They are more than happy to explore off label drug use, but wanted me to take a survey first of what others who have MND have gained some success from. I'm willing to try anything, (ANYTHING!) and would love to hear from people what has worked for them- aside from the normal stuff recommended for MND. Perhaps others' doctors have prescribed unusual medications that have been successful. Please feel free to pm me if you feel uncomfortable posting publicly. I understand, with my provisional diagnosis of PLS, my situation may be different than most, but I am looking for any suggestions for what has worked for others. At this point I am still prominently UMN, with the neuromuscular specialist unwilling to rule out ALS for the time being.
Many thanks
~Fiona
I would like to be able to enjoy what function I do have, while I still can. But I am not able to do anything more than sit and stare at a wall. My lack of energy even affects my concentration- to the point where I am unable to manage more than a page or so of a book before losing focus.
I am very fortunate that I have two doctors who are very open to finding out what others with MND have found success with when it comes to fatigue busting medicine. They are more than happy to explore off label drug use, but wanted me to take a survey first of what others who have MND have gained some success from. I'm willing to try anything, (ANYTHING!) and would love to hear from people what has worked for them- aside from the normal stuff recommended for MND. Perhaps others' doctors have prescribed unusual medications that have been successful. Please feel free to pm me if you feel uncomfortable posting publicly. I understand, with my provisional diagnosis of PLS, my situation may be different than most, but I am looking for any suggestions for what has worked for others. At this point I am still prominently UMN, with the neuromuscular specialist unwilling to rule out ALS for the time being.
Many thanks
~Fiona