Patterns/non-patterns

So I joined an "MSers ask each other questions" group on Facebook, and I'm seeing an interesting pattern...

1. Nobody says "[Treatment X] made me feel better." Nobody. It may be that a few people find to the contrary, that they have indeed improved... but from what I hear, they are a minority, and they certainly speak much less loudly than the people who experience no improvement.
2. Lots of people say "[Standard DMD] didn't work."
3. Lots of people say "[Standard DMD] didn't work and it made me feel awful." And many add to that "Which of the others should I try?" (I expect the next thing that will happen will be... "See what is mentioned in step 3.")
4. Everybody's description of their symptoms is different. Very different. Suffering is in common, but exactly what's at the forefront of the suffering... is unique to everyone. There are some common threads... "bladder doesn't work right" seems a tragi-comic favorite--but how things malfunction is unique. "A body part feels uncomfortable" is also nearly universal--but which part, and how, is unique.
5. And the words that seem to rise to the fore most often, and most ardently, are ... "Do any of you have any ideas about how to help me?"

So, and I add the caveat that none of this is a "scientific" survey of the state of the MS Community of the Afflicted, but the patterns I see here, and elsewhere on the web, are

• The "official" drugs don't work. They don't work. I'm not talking about in-a-test-tube or in-a-mouse highly controlled and cherry-picked laboratory data... As far as the people who take them are concerned, for the vast majority of them, as far as they can tell, they just don't work. And just to clarify things, by "work" I mean "Make you feel better and make the disease go away, as far as you the sufferer are concerned." Not in the lab. In the patient. If the patient couldn't stand up, they're better when they can. If they couldn't control their bladder, they're better when they can. Very simple.
• In fact, nothing works. Now, to be fair, to say "nothing works" may be a slight over-generalization... I know from personal experience, and personal contact with other MSers, "nothing works" may not actually be the "right" way to describe things, for every patient, in every case. It's not that "nothing works," it's the same basic idea that "one size fits all" actually means "one size fits all improperly." Something helps each person, somehow. Something makes people feel better... but that "something" is different for every "sufferer." 
• Everyone's experience of "life with MS" is completely unique to them.  They experience it physically, intellectually, and spiritually, completely differently. Is it any wonder, then, that "one cure" is eluding everybody?

Then again, there's life...

• No "anti-aging" or "life-extending" drugs work. None of them. I'm not talking about in-a-test-tube or in-a-mouse highly controlled and cherry-picked laboratory data... As far as the people who take them are concerned, they don't work. (Here, I don't count "You had diabetes and took insulin and your life was extended," I'm talking anti-agapic, realm-of-science-fiction-and-faantasy, actual life-extending drugs, despite what people may claim about the magic of ginseng and reishi mushrooms.)
• In fact, nothing deliverable via pill, injection, or anything else, works to alleviate the suffering that's part-and-parcel of simply being alive. (Buddhists, I know that the dharma says that attachment causes suffering, but that's not part of this discussion.) Now, to be fair, to say "nothing works" may be a slight over-generalization... I know from personal experience, and personal contact with other people, "nothing works" may not actually be the "right" way to describe things, for every person, in every case. It's not that "nothing works," it's the same basic idea that "one size fits all" actually means "one size fits all improperly." Something helps each person, somehow. Something makes people feel better... but that "something" is different for every "person."
• Everyone's experience of "life"... is completely unique to them. They experience it physically, intellectually, and spiritually, completely differently. Is it any wonder, then, that "one solution" is eluding everybody?

Well then, it's a fair question... So what does that mean we're "supposed to" do?

Exactly what we're doing. Talking to each other. Listening to each other. Trying things that have a track record of working (at all, and per-patient-repeatably), that are completely customizable to each individual (because if there's anything we as humans can agree on... as much as we're all the same, we're also very much all different). And don't give up. "Take a break," yes... but don't give up. 

And laugh. No side effects, there! And besides, as the character Jackson said in the movie Andromeda Strain... "Hell of a way to run a hospital."