Damn. And we just learned, last night in Anatomy class, about the myelin sheath on the nerves in the muscles and how they are affected by MS. Wow. Just wow. I'm looking forward to learning more as I go. For now, with what little I know, I wonder if taking the amino acid L-Lysine wouldn't help you a bit. The aminos 5-HTP and L-Phenylalinine are supposed to downsize pain. I can't recall why but I could look it up if you want. Later. After my psych course exam. Ugh.

Oh, on the L-Lysine, quelle trippe -- it's one of the "bases" for producing "Copolymer 1," aka Copaxone, the only approved non-Interferon drug for treating relapsing M.S.

There were things about Copaxone, and why it worked, that were poorly understood -- the formula is similar to the makeup of myelin cells themselves, so molecular mimicry was always considered part of it, but there are studies purporting to show Copaxone has immuno-protective benefits over and above the "M.S. munches Copaxone instead of actual myelin" preventing future relapses.

I really liked Copaxone too! I only stopped taking it because I'd gone from Relapsing-Remitting to the Secondary Progressive form of the disease, and, well, Copaxone is EXPEN$IVE. I'm talking a couple grand per month expensive -- Medicare Part D covers it, but 20% of a bundle is still a smaller bundle. ;-> Cost/benefit analysis said that if the benefits were only "possible" while the cost is "sufficient that I could spend the bucks on other things to improve my lifestyle," it made more sense to have an extra couple hundred a month to spend on, y'know, transportation, materials for the DIY home adaptations, maybe a nice weekend in cooler climes here and there.

I can forget how interesting all this stuff is while I'm in the midst of it, sometimes. But in the end, it remains...really, really interesting, and that's exciting. ;->

So, I did a little reading on Copaxone. L-Lysine and 5-HTP, indeed. You can pick those up at TJs or any health food store. Probably cheaper thatn Copaxone. Further confirmation of my suspicions: Thursday, we learned about muscle fiber vesicles full of aceylcholine. L-Choline is even cheaper than 5-HTP, I think. And you might be able to get it at the local grocery store.

One of my classmates has MS. Her lesions are in her brain and on her spine. You would never know it to look at her, but she lost use of her left side for a year during which her husband did physical therapy on her, everyday.

I couldn't recall where your lesions are. Maybe I never knew?

Yow, I'd hope it was less than Copaxone -- Copaxone costs about $2,000 for a month's supply! =:o

There are a couple odd side issues for folks with M.S.: ironically, we don't want to stimulate the immune system, because apparently this kicks up the old auto-immune overload, and may worsen either the symptoms or (possibly) the disease course itself. Overly ramped immune system, vs. underactive, as with many physical ailments and woes.

The other is one I don't really understand, which means I can't parse it: when Relapsing-Remitting M.S. changes to Secondary Progressive, most of the FDA-approved medical treatments become ineffective. Obviously, something changes. My neurologist believes that it's when the inflammation factor becomes less important, which makes sense, as steroids will also lose their effectiveness around this time. When the inflammatory stuff dies down, the neural degeneration kicks up, and axonal death occurs, and remyelination efforts from within the body begin to fail. Same for all the Interferons. Copaxone is the red-headed stepkid of M.S., being the only approved tx that's neither an Interferon, nor chemotherapy.

When I was still taking C, my neuro expressed the belief that it had neuro-protective benefits above the relapse rate reduction (which is what all the approved treatments do -- cut relapses by about 1/3. That's all they're approved for, and it's all people should really expect from them, although some patients and some doctors both, I think, have overly high expectations). He didn't fully explain his reasons for believing this, however, so to me it was basically a suspicion, which means it might do some good, or it might not.

With that understanding -- and since it's unapproved for Secondary Progressive M.S. -- I quit taking it, because hey, I've got things I already know make me feel better that I could spend the money on, y'know? This is extremely interesting to me, as I've always been a "show me kid" -- doesn't matter if 100 people do something and get similar results, until I've done that thing myself, the results are an open question, right? ;-> I'd be willing to spend a fair amount on supplements and such, to give them a chance, till I can see if and how they affect me specifically.

I have a couple spinal cord lesions, but carry the main lesion burden in my brain: frontal, parietal, and occipital lobes, and brain stem. Yeah, in my case, M.S. can potentially do a lot of fucked-up things, with those lesion placements. :/ (Those are the ones I'm aware of, haven't had an MRI in several years, so there may be more. Medicare will only cover the MRI if there's a reason for it, and since I'm not currently on any FDA-approved drug, there's ... not really any medical reason to have multiple MRIs, and I ain't paying full price for one just to satisfy my insatiable curiosity. ;->)

Many folks with Primary Progressive M.S. carry the majority of lesions in their spines, again, for reasons that are poorly understood, and those folks tend to have a much harder time than us SPs, who apparently get lesion patterns same way as RRMS, till the secondary progression and axonal death and slow, steady progress of disability. My first episode, my entire left side went blooey. I remember thinking I was "lucky" because I'm RHD. My very last relapse before the SPMS downgrade, it was my entire right side! It's been slow, slow going, and I never did get 100% of the function back. Hey, we live, we adapt, we survive, right? :->

I'd like to do more in hopes of halting or even slowing down the progression, but get stymied by both financial and logical stumbling blocks -- I don't want to take something, even something free of cost, with no assurance it'll do any good, a definite possibility it will do something bad, that even the supposed experts say is "not fully understood." I did a lot of clinical trials when I was younger, but the bloom's pretty well off that rose at this time.

I want to research and learn more about the stuff you've mentioned, for sure. It's kind of exciting! :D

Ack! No inflammatory response mechanism? I don't know alot about that (yet), but I *do* know that's necessary to cellular repair/replacement.

I'm so glad you are willing to discuss this stuff. We don't get enough applied info to keep me fascinated. So, it's been a slow slog through memorizing new nomenclature and actions. You're injecting the application I need to really learn this stuff.

Well, there's still some inflammatory response mechanism there; when a person has relapsing-remitting M.S., the current belief by the experts is that the inflammatory mech is doing the driving in the earlier stages of the disease. Thus, dampening the inflammatory response helps keep relapses at bay, as well as providing some symptomatic relief. It's why steroids are so effective for most folks during the earlier years with M.S., but will tend to lose their effectiveness once the disease course goes progressive, or even (I believe) in later stages of the disease that continues on an RR course.

It's also a partial explanation for the efficacy of the Interferons -- those bad boyz dampen both inflammatory response and immune response, just like 'roids do. At this point, my doc told me, any inflammatory response has less of an impact on the disease than it did earlier on; what's causing progression and symptoms at this point is mainly the axonal death and subsequent neural degeneration.

I've had an interesting opportunity here; not just observing disease and health from the inside out, but being able to watch the birth of the entire M.S. treatment industry! When I was diagnosed, steroids and IVIG were the only approved treatments for M.S. When Betaseron, the first FDA-approved Interferon treatment, and the first other than 'roids and IVIG, first came on market, they claimed to have "underestimated the desire for the drug," so not nearly enough was available. They had the "Betaseron Lottery," which didn't mean you got it free, you "won" the privilege of paying close to $2K per month. Every patient with an interest was assigned a number, and then they spun the wheel. I was in the second group, so I had to wait for the opportunity to try the stuff. When I got my shot -- hehe, pun intended! -- at it, it was very disappointing. I did clinical trials for Avonex and Rebif, the other 2 Interferons -- only way to afford most of these treatments, for me, was in clinical trials. Plus I really enjoyed doing trials -- well suited to my nature. ;-> But I'm what they call an "Interferon failure." For whatever reason, it seems all the drugs, Interferons and Copaxone both, are more effective the earlier they're begun; since none of them were even available for 4 years after I was dx'd, maybe we just didn't get to it fast enough.

Or maybe they're not quite as effective as the hype -- they don't work for everyone, even when the patient starts injecting right away. But obviously, being the first treatments, there was a huge demand. It changed the way researchers thought about M.S., and a lot of good was done. At a certain point, tho, it actually put a damper on research, because it was easy to get grants to study things with proven efficacy in some way, and the majority of the research was into stuff like other Interferons, combining an Interferon with Copaxone, trying for a non-injectable formula, coming up with auto-jectors for needle-phobes, trying to figure out how to minimize the side effects of the "CRAB drugs" (Copaxone, Rebif, Avonex, Betaseron ;->).

Meanwhile, studies of sodium and potassium ion channels, synthetic myelin, and anything for the Progressive forms of the disease went by the wayside for years, while CRAB drugs made investors rich. My suspicion is that part of the reason everything is "more effective" for RRMS than either of the Progressive forms, may be simply because RRMS patients have remissions. It's entirely possible that large numbers of patients on the disease modifying drugs simply go into spontaneous remission while on therapy -- this can make the drug seem more effective than it is.

It sounds like bright-siding things to say learning about the disease and its treatments has been fascinating for me, and maybe there's a bit of that involved, but ... it really has been fascinating for me! ;-> When Tam was going to Grossmont before she went to SDSU, she still lived here, and she and I would have a cup of coffee every day before she split, and discuss scientific matters, LOL. "What role to oligodendrites play?" "What does anti-TNF mean?" Y'know, the usual mother-daughter stuff! :D

That is so cool that Tam was interested in discussing the scientific info that fascinates you and me. My eldest daughter is like that.

Meanwhile, studies of sodium and potassium ion channels, synthetic myelin, and anything for the Progressive forms of the disease went by the wayside for years, while CRAB drugs made investors rich.

This just pisses me off. The anatomy instructor has her Masters in biochem. She briefly explained the game she and others have to play in order to get funding for their research. They have to claim it's for cancer research or whatever will pay the funding.

Pain is inevitable. Suffering is not.

Much love to you my girl. Hang in there. XOXOXO

I'm kind of amazed how much better things look with just one single day off. I sat around smoking weed, did a bunch of asana, smoked some more, light on the chores, heavy on the RE4'ing. I was noticing the improvements right away.

Pot plus yoga = big time relief. LOL, it's almost like, well ... magic! ;->

I'm getting better at giving my head a shake. It really only came to me while I was talking to Hel about it -- it's like, after a really good run of days, M.S. has to "jump up" (so to speak) and remind me it's still here.

A different way of looking at it is, when a bad day (or run of days) occurs, it's a way of smacking me upside the head with the fact that I'm coming out of a whole run of good days -- like, a reminder that I'm supposed to be reveling in the good times and shrugging off the bad. If it takes a real bad time to remind me -- or to get me to notice in the first place -- that times were very good beforehand, then I reckon I'm not being mindful enough while the good times are actually here.

Or somethin' like that. NEwayz, today it's down to a very dull roar, and I'm totally appreciative. Can't wait for today's yoga session. Then there's more chores .. O joy. ;-> Even the inherently sucky stuff is less so after a decent night's sleep!

I agree, without the bad days we tend to take the good ones for granted. Doesn't mean we like the bad days, but that is more a silver lining than anything else. Recognition is a good thing, even if it takes something not-so-good to get us there.

I know how tough a cookie you are and I never worry about whether or not you're gonna come out of the rough stuff. Of course you are... and I'm glad that pot and yoga were there to help you out. ;)

Enough cannot be said of a decent night's sleep either. I'm needing one of those (damn bladder has me up every 2 hours almost exactly).

I was thinking of you yesterday, BTW. I could feel the muscles in my thighs, calves, and even feet tensing up and pulling in different directions, and it was yanking right on my kneecap -- OUCH. :/

Hope your knees are feeling groovy, or at least much better! :->

Ouch indeed! I'm not quite to the groovy part yet, but I'm working on it. New therapy is helping out a lot (I'm going 3x a week). Two days in the pool and one day on land. My tone is way up and my spasticity is really high, so I've been hitting the Zanaflex more than usual. I'm hopeful though, and I know I'm doing what I can to make it better. Hope it works! *fingers crossed*

Hugs and sympathies...

I'm just getting introduced to this stuff, myself. For the last year I've had this thing where one of my feet will go into what feels kind of like a charley horse. damn that's uncomfortable. no telling what's going to set it off. Tight shoes (but only sometimes). Standing too long (but only sometimes). Once it happened when Jeff was giving me a foot rub. I had a devil of a time persuading him that he didn't "do" it...

Why did your post get tagged for a "minor filter"? Did you do that yourself, or did it just happen?

I hear ya -- spasticity, I know, causes a lot of "other" problems. My muscles will clench and just not want to release, and I get knots. Hel was giving me a back massage, and suddenly I got this MAJOR TWINGE down the calf and my whole lower leg started twitching and I let out an "Eeeep!" His hands were nowhere near the spazzy leg, but he jumped like a scalded dog, and was afraid to touch me again.

When my foot weirds out, doing the muscles to the sides of the spine seems to help some. Unless, of course, it's the leg muscles doing the twist! Ai yi yi.

I'm very pleased with the effectiveness of medpot for spasm, spasticity, and spazzy pain; it's less effective at keeping everything nice for any length of time. I could use pot only and completely forego the Zanaflex and get as good or better quality relief for the immediate symptoms. However, smoking a joint before bed -- it wears off before I'm ready to get back up again. Popping a pill works better for that, but no pills means we duz what we can. ;->

Yoga helps with hopefully preventing or lessening future nasties. It feels like a race sometimes: try to outrun the weirded-out brain signals before they get too entrenched.

sorry - that last comment about the spazzy foot was from me...didn't realize I wasn't logged in.

I can't even fathom what it must be like for you. Having my own bouts of ill health can so quickly get me depressed, angry, etc, etc. And my issues are so damn inconsequential in comparison to yours.

I think your situation is actually worse than mine. In my case, there's an incurable disease at play -- there's never really a return to a normal "baseline," it's get used to the current level of ability, work with and/or around stuff, move forward.

In your case, there was a horrible serious injury -- but you are recovering from it, and there's a return to normalcy, then it jumps up and kicks you again. Hmm, in some ways, it's more like when I still had relapses and remissions, maybe.

It sounds really weird, but in some ways it has been easier being downgraded to Secondary Progressive. There aren't any remissions as such, but there are plateaus, there are good days to offset the less-good days. There aren't any relapses though, either. The progression is slow, not generally noticeable day to day, more like looking back at where I was and what I could do a year ago, say.

Having relapses was just teh suck. I could feel like a million bucks, and literally by the end of the day be paralyzed below the waist. BAM! The disability was sudden and unexpected, and usually came at a time when I'd almost managed to forget I had M.S. Unpredictable and incontrovertible.

I just have more time for things -- time to plan, time to adapt, time to fight, time to sort stuff out. I'd rather not have to make time for all those things, natch, but since that's the way it is, I reckon it's better to be able to catch a breath between sucky problems! ;->