So I got to thinking. Given that MS fatigue is the most complained about symptom, why are more bespoke treatments for MS fatigue not a huge priority? Most MS fatigue treatments are usually originally made for other diseases, ie: Modafinil was originally used to help narcolepsy.
I think we deserve a fatigue treatment totally dedicated to MS, (or a defined combination of the best suitable treatments available), it makes sense. My life is ruined by fatigue and, according to statistics, it will become progressively worse. I don’t feel that MS fatigue is taken seriously enough.
“I’m utterly exhausted.” Oh that’s a very common symptom of MS, nearly everyone gets it... Why isn’t there more urgent research and/or solutions to such a massive life limiting symptom? Where is my quality of life?
Also, on American forums, (using just one example), huge success treating fatigue has been attributed to the combination of Adderall with Modafinil, Adderall is of course is not prescribed in this country for fatigue. I have spoken to lots of people who say their life has been transformed by the combination, and they get up before 9 am and stay awake all day with no sleeping! They feel normal!
To my mind, the MS Societies should use their might to collate and evaluate all the different methods for treating fatigue globally, and pass the vital results on to us and our doctors. After all, is knowledge not power? My fatigue is destroying my life and I think the MS Websites should address this crippling affliction more.
It’s 2020, why on earth with all the research, donations and medical advancements available in the world am I not awake? It’s a basic but essential right of life to be awake. It seems RIDICULOUS! Yet we are left to suffer and just get on with it?
Can we all please rise up and demand bespoke treatment/research for the treatment of MS fatigue specifically? This is no way being taken seriously enough by any of the MS website organisers and it beggars belief that MS related fatigue has no new drugs or any form of possible bespoke treatment soon to be available, even on the horizon. WHY? Do we not count?
I beg you, let’s revolt and end the suffering.