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ShiftKicker

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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
 
No one has talked about it recently here but I do remember people saying Mestinon which is an MG med has helped them.
 
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This is a question that comes up often. Fatigue is definitely our NEMISIS!
I was looking forward to trying Provigil in January when my next clinic is. My research on it seems to indicate that a percentage of MND patients get a boost from it.
Spasticity is a big issue for me, but when I have used the popular meds Baclofen and Tizanidine, my fatigue increases.
There is no common denominators works for every person with MND. That is one of the frustrations about this crap.
I have to force myself to do chores and exercise, it is rough and I have to take breaks often. Sometimes when I take a break from a project and sit down, I can't get back up to finish the project.
If you find something that works for you....Please let us know.
Energy drinks and coffee don't even have an affect on me, like they did pre-diagnosis.
 
Nikki-
Thanks. That's exactly the kind of thing I'm looking for. It goes on my list for my next appt.

Mark-
I had very high hopes for Provigil. I had actually pinned ALL my hopes on it. It did absolutely nothing for me. However, many other people I've spoken to had wonderful results with it. They reported miraculous energy, no jittery feeling, ability to complete tasks, etc. Sadly, I did not get the same. I wish you the very best results- I hope it works for you. My one recommendation is you purchase a week's worth first to see if it works. I'm not sure if you have drug coverage through insurance, but it can be spendy- and you don't want a month's worth of expensive drug if it's not effective for you. It should be effective quite quickly- you don't have to wait for it to build up in your system to work. Good luck!
 
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Sleeping 16 hours a day is not uncommon for me these days. Other than foot drop and bipap use I'm otherwise pretty functional. I mentioned ritalin a while ago as well as energy drinks, both were shot down as risking faster progression. I'm on clinic next Tuesday and was going to see about getting help with fatigue. But I guess if it wasn't messing up your life it wouldn't be ALS.
Vincent
 
Hi fiona
Tough one.
My doc wanted to put me on baclofen but I said no because of the side affect of drowsiness.
You're right about sleep, having heaps can make it worse!
I really don't know what to suggest.
Some days if I'm busy with stuff I cope well, but then end up in bed for a few days as a consequence!
All the best with finding the right answer for you.
God bless, Janelle x
 
Fiona, you're lucky you have doctors willing to prescribe off label in Vancouver. None of my doctors will.
Charlene
 
Charlene-
You are absolutely right, I am very fortunate and blessed to have two physicians willing to explore alternatives. They are also very intellectually interested in MND, and very well aware that the online community is more expert than any local specialist- and open to learning as they go. Neither of whom are associated with the ALS clinic and both of whom have known me since before my MND diagnosis. They are not working against the ALS clinic- they are careful to check to make sure nothing counters treatment there- but are very open to whatever others' experiences are. I've found the ALS clinic does nothing but assess function (or loss thereof) and give very conservative advice. Last time, I was told to drink more coffee for energy. That seemed particularly tone deaf. The social worker there also told me to "live in the moment- be present" when I expressed distress at having fatigue.
I understand the concern with advancing progression if using false energy. I am willing to take the risk, as I am unable to take advantage of what physical abilities I do have due to fatigue. I am already sitting in a chair the entire day and unable to complete any sitting task in reasonable time due to concentration and fatigue issues. I am not even able to parent properly at this time. Arguing with a teenager takes energy- something I'm short of these days.
 
I use MMJ to counter spasticity and for energy I find Creatine Monohydrate seems to work well.
 
Fiona,
You said you tried various antidepressants. Was Wellbutrin one of them? That drug made me feel like I was on speed. I ended up with Remeron, which in low doses makes you drowsy but in higher doses boosts noradrenalin and is more activating. Many doctors just try various SSRIs.
 
Also, I know you said your diagnosis was pls but is your breathing okay? Any decline in breathing function can make uou very tired.
 
Brad- I also use mmj, with great results for spasticity. Unfortunately is does absolutely zero for energy. I will not give this up for anything though- I swear it has reduced my spasticity by 90% and has been the only thing that helps me actually move around during the day, and allows me to sleep at night.

Kim- I tried the Remeron, but it actually caused tremor (and made for an interesting couple of months while the doctors considered other neuro diseases because of it). It did not help with fatigue, sadly. Wellbutrin is on my list of things to talk to the gp about. I have heard from another group that it can increase spasticity. I am willing to try if it also gives energy.

gooseberry- I'm not sure about the breathing, but think it's pretty good. I had an overnight oxymetry test back in May that was completely normal. I have been waking recently with coughing and the weirdest feeling I can't swallow- however, I am chalking that up to acid reflux due to medication. I'll be pursuing that next appointment to try to get something to help with it. In July the ALS clinic checked my breathing and I was at a better than normal level. My athletic background is standing me in good stead for now.

Just an update on the Modafinil/Provigil- I was expecting miracles, however, I have received a very tiny benefit in that it can give me enough energy to stretch and do a very light (15 mins) of mobility exercises without crashing before I'm done. Adjusting expectations and having smaller goals seems to be the name of the game.

Thanks again
 
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