Last reply 3 years ago
Pass the Billy Bonza Baton

@BillyBonza,I was looking forward to reading some really thoughtful feedback, and it started out with vacuous observations about spelling and grammar errors in some blog writings that were thrown together in a jiffy thinking wrongly that we must be in similar places in our MS journey; and I would give you a starting point to check out the best thing that I have found. Your choice of therapy is illegal here. Many, smarter than I, have described lemtrada as a stair step improvement in fighting MS. I am not even sure you have the same respect that I do for MS because you seem so worried about everything else. It’s killing me! I will tell you like I was told “What do you have to lose?” My QOL is hardly tolerable. You think some stinkin thyroid disorder is going to dissuade me? I came to this blog out of a sense of duty to warn the unsuspecting youngsters what uncontrolled MS can rob from you. There are far too few places that will tell them. You concluded in just 1 day what empaneled specialists from more than 40 countries around the globe (of course all corrupt!) could not determine when they approved Lemtrada for their fellow countrymen’s sons and daughters with a vicious disease. You then lurched into the same tired paranoid diatribe that no one but you can have a pure thought. How jaded is that? I Unfriend You! ๐Ÿ™‚

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Anonymous
3 years ago

Sorry mate, I knew I wouldn’t receive a favourable response. I think I get most of what you’re saying. Perhaps most importantly the difference in our respective positions as far as disease progression and so on.

I’ll leave you to it.


cameron
3 years ago

I’ve read posts from you both and have taken note of the views. I know I’ve learned something from you both, so my thanks. Likely others have too. Never mind ‘unfriending’ – is it not time to take a step back and listen to the other side? We’d surely all agree that the MS scenario is hugely complex. There are very few certainties, even if our personal experience tells us differently.

PS As for corruption/greed in the MS/pharma world, it’s not universal. Read some of the Clinic Speak of Prof G’s posts in the Barts MS-Research blog. He describes the twists and turns of clinical decision-making and his own moral responsibility which he feels acutely.


Anonymous
3 years ago

Hi Cameron, wise words. I have listened to my friends (unliked or not) point of view and all he has had to say. I just disagree but not holistically. I understand we are talking about different people with different lives and different needs, hopes, thoughts, feelings and resulting different actions.

You’re also right in that not everyone can be bad, just most of them. Yes dark humor, funny cos its true. Its just a fact of my life, no one is looking out for me as well as I am. Most aren’t looking to screw me over maliciously with intent, despite what my friend thinks paranoia does not play a part here. But most won’t put my interests before their own either if it ever comes about, actually none will. Just my stance based on my first hand observations and my collective opinion based on everything I’ve ever seen and read.

My very hard to understand position is this, I don’t tell people this or say it like this, because watch the s*** roll in when I do, God forbid I’d ever think for myself but here we go. My life is not the most important this in this world, far from it. I live in a world were as sad as it is money rules all. People are still good at their core, in essence, but we live in a sick framework, global financial systems and capitalism and walking over your own grandmother for a dollar and targeting the sick for making money, all that absolute evil. I’d take up arms again wall street any day, but never my fellow man from anywhere. Because of the sick environment and social structures we have made for ourselves and allow to continue each and every day for no reason, certainly not for the benefit of the 99%, things like the topic at hand, health, medical research, drugs and the truth all get skewed and tainted and twisted all in the direction of the black hole of money. I don’t and can’t trust any of it. Again who’s acting in my interests here? Only me. So with that in mind, I just so happen to be a very unlucky person in this world who has MS, stiff s*** for me. I see it as the best thing I can do for myself is accept the reality that no help is coming, come to terms with the facts of MS and how that will negatively effect me seriously, do whatever I have to do to find some peace with that and carry on with my life just like I want to anyway. So I will die young and all that, ok, so I will. What I won’t do is support this f***** up piece of s*** system, this world, I won’t line Pharmas pockets any further and support this whole circus, I won’t become desperate clawing at the walls of the well trying to keep myself propped up artificially and I won’t risk poisoning myself further with any ‘medication’ which in all likelihood could actually shorten my time even further and also make that time a misery.

This is what I’ve been dished out, I’m a grown man, I’ll take it. not happily, f*** no. But its the best rational acceptable way forward and thinking for me. I can live with it. I can’t accept the other way.


druid
3 years ago

I wish there was a button to take that swear filter off – Billy good to hear you again, i like your attitude towards this ugly thing we all have. I have learned a lot without having to wade through pages of information!
Thanks for being, not being outspoken but just for being! Wish we could meet it would be a blast.

Les


Anonymous
3 years ago

? Thanks les! You have no idea what that means to me. Mostly I just feel like im on my own in the way I think and feel pushing shit up hill constantly. And I cant take the swear meter off anytime you like just say the word;) na, I do respect that other people don’t like so much profanity but my compromise is my old friend the *. Ill be f***** if I’m not speaking however I like to give proper emphasis and effect when needed. So that’s that. You made my day


Anonymous
3 years ago

Oh and by the way Mbrsinc, for future reference, im the king of cups, not batons


tracyd
3 years ago

@mbrsinc

Oh good glad it’s not just me ๐Ÿ™‚ I was starting to think I’d need some cheese to go with the whine ๐Ÿ™‚


Anonymous
3 years ago

Just reminded me, @mbrsinc where exactly where you f****** reading my “diatribe that only I can have a pure thought” you’re f***** losing it. I dont see anything like that in what I said? As a matter of fact I apologised at least 3 times for treading on your big sissy toes


Anonymous
3 years ago

@tracyd, I passed the baton. I guess you get it today. Good luck!! ๐Ÿ™‚


tracyd
3 years ago

@mbrsinc YAY I’m such a lucky girl ๐Ÿ™‚

Probably better than winning a goldfish in a bag for either of us …. our puddy-tat’s would eat them ๐Ÿ™‚


Anonymous
3 years ago

@billybonza, I take a lot of drugs. You never know. I’ve stopped trying to predict. The “unfriend” thing is a parody of a parody taken from a commercial run regularly here where 1 old gal tells another she is going to unfriend her by moving a paper label over her name on a bulletin board. She retorts “That’s not how that’s done, that’s all wrong!” Struck me as funny. Did not mean to offend! ๐Ÿ™‚


Anonymous
3 years ago

@tracyd, My kittens ate my goldfish. That’s why I am back in the boat. Fishing for more. Damn cats!! ๐Ÿ™‚


Anonymous
3 years ago

Ok, fair enough


Anonymous
3 years ago

You had me at I take a lot of drugs…


Anonymous
3 years ago

I am trying to remain upbeat! Been trying for 3 years to get this drug which I view as a “Hail Mary” pass for me. I am not looking forward to having my immune system shot to heck, but it’s a wreck as it is apparently. I’m going for it! The decision making phase has “left the building”. ๐Ÿ™‚


Anonymous
3 years ago

Who are you talking to?


Anonymous
3 years ago

Sorry. Semi private musings while distracted with our stock market. Remember, I day trade now.


Anonymous
3 years ago

These drugs aren’t cheap!


Anonymous
3 years ago

Yes mate of course, why wouldn’t I remember…

Yeah im really just hoping for your sake they are illicit.

Has it got to the point now maybe you think that the drugs have become part of the problem and maybe a little detox washout holiday then you know restart what you then need? Still stay on the gear the whole time thought just a tea party and no prescription meds?


Anonymous
3 years ago

Good thought! Quite impossible. I require hits of 5 different agents every 3 to 5 hours to do a poor job with the nerve pain and spasticity. That’s one of the greatest benefits reported by almost all of the lemtrada patients I have knowledge of. They have either been able to cut way back or quit even more drugs than I am taking. That would save the organs you were talking about yesterday.


Anonymous
3 years ago

….as well as restore a lot of lost function as SEs of those drugs. It would make a huge difference alone. Plus, I have virtually nowhere else to go since I am maxing out recommended dosages.


Anonymous
3 years ago

So mbrsinc, just to clear a couple of things up, you can’t seem to communicate properly or have a clear thought, presumably due to these “drugs” you keep raving about but your a “day trader now”? Like as in on the stock exchange? How’s that working out for you?” Rich yet? Beating those future trade computer generated algorithm predictors are you?

You said…

“I am trying to remain upbeat! Been trying for 3 years to get this drug which I view as a โ€œHail Maryโ€ pass for me. I am not looking forward to having my immune system shot to heck, but itโ€™s a wreck as it is apparently. Iโ€™m going for it! The decision making phase has โ€œleft the buildingโ€.”

waiting for 3 years for your Hail Mary, I’d be worried about what happens in the circumstances where “this drug” doesn’t end up being what you think it is or doesn’t meet your expectations? What then? If this is your last chance, something you have been holding out huge hope for and then it lets you down, your setting yourself up to walk off a huge emotional cliff. You should think about that. You seem to be putting all your reliance and hope outwards. I try to bring all mine inwards, have faith in myself, be content within myself.

I’m not suggesting don’t have hope and try Lemtrada, actually from what I know of you I would say go for it, if you’ve been through everything else, pain is intolerable (PS. smoking weed is illegal here too technically, so my “choice in medication” as you put it is illegal I just have some balls and can think for myself so I find a way), it has had amazing effects on some people, you’ve got no where else to go, then I say go for it too. Has it not dawned on you though, if you give anything I’ve said a single thought, that throwing Lemtrada on top of all your current s*** may actually have the effect of not working for you like it has for others but rather allow some viral infection like those listed in your own literature on the matter to take a hold and then, your in pain and you dead, or as good as? Your immune system is already “shot to pieces”, it sounds like your history is having taken every other therapy under the sun, your current ‘pill pie dispenser’ has you popping and sticking yourself with all types of s***, God knows what it is your actually talking about or taking, and your moving straight to Lemtrada without any break or clean up from your current concoction and what, then still taking it all and Lemtrada at the same time? Sounds like a load of BS to me? Who’s monitoring you here medically, anyone? How are you going to keep up “hits of 5 different agents every 3 to 5 hours to do a poor job with the nerve pain and spasticity” after your Lemtrada infusions when your wiped out for weeks after while your immune system reboots and you cant even lift yourself out of bed? Maybe there is a medicinal purpose for China White after all? I’m sure that doesn’t have any interactions with Lemtrada, and its not a suppressant? There you go, i can start calling you “Horse” it almost sounds cool depending on how you think about it:)

Some food for thought.

And next time you and your swine friend want to try pseudobully someone with you starting a post in my name and with your semi private musings on absoult f**** BS, f*** off and try someone else you d***h***, cos I don’t take no shit from nobody ok? Good I’m glad we cleared that up.

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