Last reply 3 years ago
Guess Who's Back…….

G’Day Kids,

How are we all? Its ok don’t answer all at once, it was rhetorical. I do still care though, honestly.

Stumbler just had a cold shiver and can’t work out why, but he soon will. Stumbler, whatup my man?

Ok hold up, for a brief moment of seriousness, probably best to place this little disclaimer somewhere at the top, if you are easily offended, prone to taking general comments and opinions personally or if you happen to just be a f****** winger generally, turn back now, I repeat, turn around and go back out the way you came. It’s for your own good, and mine. It’s the crying I can’t stand…..

For those of you who have never had the privilege, I’m BillyBonza. Not your average nutcase, far worse than that, I’m ‘specialised’. Unfortunately the explanation as to why is my life, from start to present day, NF BS. I’ve had to deal with that and now you have to deal with me. One hand washes the other.

My ‘fine motor language skills’ are not what they used to be. These days I’m a broad sword, there is not much finesse here, more smackdowns than anything. I’m a cannon ball fired at a mosquito, but purposefully with intent, because the mozzie was just convenient, I was actually aiming for your house. So direct hit! Mark it down. I find words and our verbal expression can be both everything and nothing both at the same time. Powerful thoughts and words are the precursor to every great action human beings have ever taken. Equally, words can be utterly and completely worthless, they are nothing used in particular contexts and especially with the addition of the characteristics of the person speaking the words. Example, William Wallace’s, “They’ll never take our freedom!” speech is a far cry from some maggot slurring “yeah, what the f*** are you lookin at? You wanna go?” at the pub on a Friday night. Powerful great action v worthless drool slurry; everything and nothing. Where do I sit on that scale? I don’t, I exist outside the scale and when I’m really enjoying myself, outside of space and time too.

Yes I’m an individual, of that there is no doubt. I am swayed by no one for nothing, with the logical exception of common sense and substantiated argument. Actually what am I saying, that is total BS, I can be swayed by practically any half respectable remotely attractive woman at any time. What can I say, I’ve got a sweet tooth. And a d***. The more you try to take something away from me the tighter and tighter I hold on without ever letting go. The more you try to push something onto me, an opinion, a behavior, a requirement, the more I reject it and push it away with no end to that either. A fundamental pain in the ass is what they call that in psycho-babble I believe.

Right, well where’s **** at? I’ve been away for quite some time, my apologies from having to separate and keep you from your Billyfix but hopefully you all managed to get by on your medicinal hooch and whatever else tickles your funny spot or nasal passage. Where have I been? See no evil, hear no evil, speakeasy no evil. F******* Hell and back is where I’ve been, I started to feel like perhaps they weren’t going to let me leave for some reason? It was ok, but didn’t do much for my core body temp overheating issue.

I don’t know if I’m quite the same person as I was back around October 2014, I don’t think it’s actually possible to be the same person after my little trip to Dante’s playground. In any case, someone got a mortgage over my body, but they’ll never take my soul (evil laugh) so we shall see if enough of Billy escaped Beelzebub. Maybe, just maybe a little bit of him came back with me. Or maybe Billy is dead and I am the Beelz? Maybe we will never know 🙂

That all sounds a little quirky and a lot illusive? No **** Sherlock, intended. I don’t wanna f****** talk about it is the upshot. So we aren’t. Now let us agree now to never speak of it again. Let’s.
Time to bring a little bit of party back to the action. They don’t call me Peter Pan the F****** Party King for nothing you know. Don’t worry, I may have slipped behind the veil momentarily but I’ve still been keeping a watchful eye on the happenings. I can see me olé mate Stumbler has been holding the forte with the utmost of diligence as always, go Stumbler, it’s your B’Day, we gonna party like it’s your B’Day….. However, my learned friend can provide you with the Yin but we all need that dose of Yang to keep us balanced and healthy and here I am. I can see you have needed my careful guidance and kind words of support (haha) in a number of instances. There’s a little bit of house work to be done shall we say. Help you all spice up the sausage a little bit again, know what I mean? And so the prodigal son returns.

Moving along to something even remotely relevant or MS related, on the Corporate peddling angle of this fun virus I have got ((gasp) did he say the V word?!?); I’ve ensured the continuation of my education and competent understanding on the majority of the drugs and associated issues and as they are slapped together with some clag paste, developed into paper mache sculptures and finalised in record time (again) in the form of “Human Pinatas” as I’ve coined them. “Human Pinatas” due the creation of meds in what seems much like a process of making paper mache sculptures like a 5 year old but perhaps not as skilled as 5 year old then wearing a blindfold, swinging a stick around until you hit something then slam the absolute **** out of it continuously until you’re sure it’s dead…. then remove the blindfold to see what you were even doing and if any lollies fell out by accident. My analogy of MS drug synthesis; AND “Human Pinatas” because that’s what we are, and the meds are the stick. The poor Human Pinatas, those lucky souls who don’t know how to think for themselves and critically and so they have effectively volunteered themselves for some significant suffering through ignorance and perhaps naivety.

Back to my inference at the start of the preceding paragraph, it’s hardly new or a secret that over time there have been many suggestions for the possibility of a virus activated inside the person as being the cause of MS. I’ve trawled through many documents and media on this topic and seen a handful of suggested culprits and their antibiotic solutions. It would seem a little simplistic this answer to the whole thing but I’ll come back to this in a moment. In any case the antibiotic mixtures and concoctions which someone would be required to take and for the length of time it would take to actually irradiate these viruses from our bodies would be in excess of 1 year and by that time your live and kidneys are officially dead so brick wall there. These types of viruses are freaky just generally; they are literally part of us in a sense. They have entwined themselves into our actual DNA, inside individual blood cells in our brains past the blood brain barrier because they’ve learned that’s where it’s safest to be a virus. As we evolve they evolve with us. Luckily because we are their home, their hosts, for the most part they stay dormant, mostly. Who is to say these little critters aren’t up in there controlling the release and flow of brain chemicals as they see fit, driving me like a puppet, punishing me when I eat things they find unpleasant? They must loooove getting toasted then, puff puff give, hey f******? Little p*****. We are a virus, Agent Smith was right. So even if it is a virus, we still got as many problems as we started with, maybe more.

Now just nudging back to where I left off on “It would seem a little simplistic this answer…”, ironically I think the real answer may be much more simplistic that the avenues which are currently being explored and shoved down our throats. I don’t have the answer, I’m not a f**** idiot, but I am suggesting my practical common sense thinking approach is better and more productive to getting to an answer than what these money making I mean medical geniuses are pursuing now.
Let me break it down, what makes people sick? Not sure? Cold weather, haha. It’s simple, the only things which make us sick are viruses, bacteria, fungi. That’s really it, those are the core 3 things that can ever make any of us sick. Secondary to those 3 is cancer which is essentially cell mutation caused by exposure to environmental toxins. Also in a similar way DNA damage or mutation caused by environmental toxicity which may not cause cancer but that DNA damage is then passed down through generations resulting in further health issues and that directly relates to last but not least on the list, genetic predisposition and that is tied to DNA damage passed down through your ancestors. That’s pretty much the full kit I reckon.

So on that basis, if I was a total ignorant wanker d*******, AKA a neurologist, and I had the problem of MS before me with unlimited money, 30 years to burn, unlimited lab rats (ie Human Pinatas) and my huge academic ego attached, how would I proceed with this MS problem? Personally I would start with the most likely category of offenders, a virus, do a desktop elimination of all viruses which could be absolutely ruled out and then keep ruling out viruses from the list one at a time in the lab and through all means available, following the clues and either come to a point where all possible viruses have been conclusively ruled out or where one virus is identified as being the hot topic to be explored in completeness. If you were to establish it wasn’t any virus, move on to the bacteria basket and start this process of elimination again and then the fungi. It’s called systematic, methodical problem solving. Any 10 year old with an Xbox could show you. Of course I have ignored the genetic component of the cause of MS in what I’ve just said and that’s why I’m slotting it back in now. The trigger of the disease must be an interaction between a dormant virus (as above, or bacteria or a fungi but less likely) which becomes activated and a genetic predisposition due to some dodgy DNA you and I inherited. I’ll leave that part alone, the interaction I mean, because practicality and being half smart will only take you so far. That s*** becomes hugely complicated and I’m nowhere near that smart to even think about throwing some s*** down in that arena. But I got us to the door in a paragraph. Better than 30 years and an ocean full of cash to still be standing in the car park…. On the other side of town in the wrong stadium like we are now in our MS cure exploration.

So once you’ve absorbed that for a moment, riddle me this Batman, why is every drug they seem to be coming up with both (1) sh***** than the last joke they came up with and (2) an immunosuppressant or immunomodulation (I am laughing as I write that word, I can’t help it), which are, as predicted by yours truly, are starting to show clear evidence within as little as 4-5 years, that they are and will kill us faster than the MS itself ever would? You can run your petty arguments all you like about your short term respite from symptoms and that “you have your life back again” and all that sh**, but that’s only until you come crawling back to tell me I was right when you’re dying of PML with a few months left to live, horrible months at that.

To be clear, all the 60 year old cancer drugs, the injectables essentially, Capaxone, interferons, they suck, their prehistoric, and generally you’ll be lucky just to not be bed ridden and end up killing yourself from the depression. The new generation, the tablets/capsules for the most part or to bundle them up, all the immunosuppressants they’ll give you a myriad of other ‘B-Grade’ side effects, some still life threatening or as good as, macular degeneration leading to blindness, melanoma (most deadly form of skin cancer), just that sort of casual stuff. But the real evil is that I would say invariably with enough time, all of this category of meds will kill you, no two ways. And from what’s emerging in my personal view, you’ll be right at that point after 5 – 10(max) years of continual use. PML people, and that’s probably just the beginning. Come one come all; trade up your MS for a real killer, PML. Oh just quickly but very importantly because it is the center piece of my argument here, Tysabri. It’s like both categories of meds combined and it will f*** you quickly and I would say obviously that’s because it’s a immunosuppressant administered intravenously and so its absorption an effects on the body are surely faster stronger that way whereas pills are not going to be taken up by the body as readily? Simple. Go and smoke some heroin and then go and shoot some up, same deal I’d say. And no I’ve never tried heroin, either way. Just finally, what will really f*** you and give you a 1 in 89 chance!, hold up pause it there, take that in, 1 IN 89 PEOPLE, who have had Tysabri in the past and then switch to a tablet immunosuppressant drug WILL develop PML. I’m pretty sure it applies in reverse too but I can’t say that definitively. And you can further increase that risk by reducing the period of time between taking one and then the other. So no break in between swapping from Tysabri to Tecfidera say, and you are in some trouble quite possibly. Of course you have to have JC Virus first as a prerequisite for PML but 80% of all of us do have JCV apparently so those odds are good, in the worst way. If you don’t have JCV don’t worry it’s easy enough to pick up at any time without even knowing. If you don’t know what JCV is, go away I can’t help you.

The problem with these immunosupressants, oh sorry, the other problems with them is that they are blanket ‘solutions’. Rather than taking the time to properly identify and isolate the immune response which causes myelin sheath damage and then creating a specific targeted immunosurpressant to just counter that ‘module’ of the immune system; what they do is just shut down or suppress your entire immune system, you weren’t using it anyway, what’s it good for? And by doing that, your defenses are down completely and every virus, bacteria and fungi, both inside of you and outside of you, can all of a sudden smell you like dinner and they’re all just waiting to pounce and eat you alive.

So back to the question, why? Why the f*** even? I’ll tell you why. MONEY! Why would you pump out as many useless death sentence drugs as you can, as quickly as you can, while still dressing them up and maintaining the lies that they work (mid to long term)? Is it that hard, think about it? Every time one of these drugs is released it gets hyped up in the financial markets, the BigPharama company completes its statutory stock exchange announcements and releases to the market just letting everyone know another cash cow is on the way so get ready to start robbing everyone again and raking that cash in a frenzy before the dust settles and its revealed to all just be BS again. Look at the financials, I’ll bet when once of these tablet drugs is released, earnings for the Pharmas is something like $700M+ for the first quarter or half after its release following which those earnings plummet significantly and then continue to decrease at a more steady rate over time. That’s just literally off the top of my head. And even more evil and sinister, these Pharma companies have these drugs in the vault lined up for staggered “controlled release” (haha) so they can guarantee timed influxes of cash flow at strategic times. Is that such a strange concept to most of us, have you never seen or heard of company asset and income forecasts? What do they base that s*** on? The past, what the f*** has that got to do with money in the future? Or are forecasts based on their plans already set for the future, as the word itself would suggest, fore being in the future or ahead of you? Got it, forehead? This is child’s play peeps, 101.

I worked with Corporate Scum for a long time and I’ll tell you what a gigantic, multinational public investment company is concerned with, no matter what their business or product, MONEY. Their priorities are to be responsible to and report to the board, private investors and major stockholders, then to public investors and stockholders and then the exchange commission/regulatory body. All in that order. Where did I mention you, or their product and its effects on you and the community in any of what I just said? Yes that’s right. You and me mean f*** all.

Right, my f****** brain hurts, could be PML, could be a tumor or I could’ve just been staring at this screen to long, whatever; I’ve had enough for now. I’m going to smoke some skunky home grown primo. I can’t even remember how or why I started this rant without rereading which I can’t be f**** doing either so, it was great to make contact again, hope I said at least one or two words of use to you, f*** is my preferred favorite, it’s always helps me, and provided the reapers don’t return for me, I’ll see you all again soon.

Just keeping it real folks and remember, the all seeing eye of BillyB sees all. Who would’ve guessed?

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3 years ago

Wow! I would say nice to see you back, @BillyBonza, but having read that lot, I’d say don’t stay away too long next time. Not if it builds up that much angst, which brings on such an episode of verbal diarrhoea.

Anyway, I do get your point and it’s nice to see you back 😉

3 years ago

Oh stumbles dont be like that. Verbal is my favorite kind of diarrhoea. But cheers for the rest.

I did mention ive been in hell for 6 months didnt I, and that my language skills aint what they used to be. And that I dont even know of I am the same person as I was 6 months ago, not possible. Do you think im joking on those points? I have mentioned in the past my “marked degree” ADD have I not? And of course the small matter of the ever increasing brain scars? Ive got more if you want……

Gimme a little break im nervous I have stage fright. Hahahaha.

Point is what I was saying is as true as true as always.

3 years ago

Right just got back in so back at the desktop instead of mashing the touchscreen with numb fingers and hands. Has anyone else experienced that with your mobile phone? Touch screen doesn’t register my finger sometimes and its not the screen, I’m convinced it is the numbness?

Just going back to you Stumbler for a moment, you did see the little disclaimer at the top there didn’t you, sir. I know I know, technically irrelevant, its posted its posted, but you really didn’t have to keep reading if you didn’t like what you were reading. Just a thought.

3 years ago

PPS. Ive got a billion and two reasons for more angst than you can fathom. What you see of me on here is a miracle in itself

3 years ago

Mmmmhhmmmm…. That took two basic Google searches and I didn’t even get to the bottom of the first page of hits. Looks like once again, Im just crazy, I know.
Multiple Sclerosis Patient Taking Novartis’ Gilenya Contracts PML
Written by David Mills | Published on 09 March 2015
A woman in a Gilenya after-market study says the company didn’t notify all participants about the new case of PML.

Novartis executives have confirmed a multiple sclerosis (MS) patient has developed a rare brain infection after taking their drug Gilenya for more than four years.

The Switzerland-based pharmaceutical company posted a notice on their website announcing the development.

The website notice said the patient is doing well. It said the patient had been taking Gilenya for an extended period when he or she contracted progressive multifocal leukoencephalopathy (PML).

Novartis officials have released a statement that says the company has notified health authorities worldwide. They also informed more than 2,000 clinical trial investigators and physicians who treat MS. The company said it has followed up with additional physicians who treat MS patients. They provided information to patient advocacy organizations, too.

In late October, a patient in Europe died from PML after taking Tecfidera for more than four years. Biogen Idec Inc. manufactures that MS drug.

In 2013, the Food and Drug Administration (FDA) sent out an alert after a patient in Europe developed PML after taking Gilenya for eight months.

In their web posting, Novartis officials noted Gilenya has a “positive benefit-risk profile” in relapsing-remitting MS patients based on experience with 114,000 people who have taken the drug.

Learn More in This Introduction to the Drug Gilenya »

One woman who is part of a current Gilenya after-market extension study said she learned about the most recent PML case after Novartis contacted another person in the study. The woman then found the announcement on the company’s website.

Her understanding is that the patient newly diagnosed with PML had never taken Tysabri, an older MS drug that has been linked to cases of PML in the past.

The woman in the extension study, who has MS, said she is well aware of the remote possibility of contracting PML while taking Gilenya, so she wasn’t surprised by the announcement. She was a bit miffed, however, that Novartis did not contact everyone in her study group or update their informed consent documentation.

“I’m not upset, but I am disappointed,” the woman said.

The Novartis statement said patients had not been contacted because the incident is still being investigated.

“As more data is pending, this case is still being reviewed by both Novartis and health authorities, including the FDA, and there is no new guidance to share regarding the use of Gilenya,” the Novartis statement reads. “Patients should talk with their doctors before making any changes in how they use Gilenya. We have therefore not communicated directly with patients. The safety and well-being of the people who take our medications is of the utmost importance. So, once we have agreed on a way forward with health authorities, we will work with them to promptly communicate more widely to Healthcare Professionals and the community, as appropriate.”

Get the Basic Facts About Autoimmune Diseases »

PML is a reactivation of the John Cunningham virus (JCV). JCV lives in the bodies of more than 75 percent of people in the United States. Most people’s immune systems are strong enough to keep the virus at bay.

People with weakened immune systems are at greater risk. That group includes people with AIDS, cancer patients taking chemotherapy drugs, transplant patients on anti-rejection drugs, and people taking immune-suppressing drugs for autoimmune conditions.

December 03, 2014
Tecfidera (dimethyl fumarate): Progressive Multifocal Leukoencephalopathy (PML)
has occurred in a patient with severe and prolonged lymphopenia.
Dear Healthcare Professional,
In agreement with the European Medicines Agency (EMA), Biogen Idec would like to inform you of
important safety information regarding a case of PML related to use of Tecfidera in the treatment of multiple
 In October 2014, a fatal case of PML, in the setting of severe prolonged lymphopenia,
was reported in a patient receiving Tecfidera for 4.5 years. This is the first case of PML
associated with Tecfidera. Patients should be informed that there is a risk of this serious
 Lymphopenia is a known adverse drug reaction of Tecfidera and patients under
treatment should be monitored regularly. Complete blood counts (CBC), including
lymphocytes, should be checked regularly and at close intervals as clinically indicated.
 Patients receiving Tecfidera who experience lymphopenia should be monitored closely
and frequently for signs and symptoms of neurological dysfunction
 When PML is suspected Tecfidera should be discontinued immediately.
Further information
Tecfidera is authorized for treatment of adult patients with relapsing remitting multiple sclerosis. Tecfidera
may cause lymphopenia and lymphocyte counts decreased by approximately 30% during treatment in
clinical trials.
Patients under treatment with Tecfidera should be monitored closely and complete blood counts (CBC),
including lymphocytes, should be taken regularly and more frequently as clinically indicated.
A case of PML was reported in October 2014. The patient was participating in the open-label ENDORSE
study and received 4.5 years of Tecfidera therapy. During treatment with Tecfidera, the patient experienced
severe and prolonged lymphopenia (over 3.5 years of duration). Prolonged lymphopenia may be associated
with an increased risk of PML.
TF-IRL-0021 Date of Preparation: November 2014 2
Biogen Idec (Ireland) Limited
United Drug House Magna Drive Magna Business Park Citywest Road Dublin 24 Ireland Phone: +353 (0)463 7725 Fax: +353 (0) 1 481 1730
Company Registration Number 421718
Lymphocyte counts fluctuated between 200 and 580 cells/µL [predominantly CTC Grade 3 (between 200
and 500 cells/µL) since January 2011]. The patient died due to complications associated with the
deteriorating neurological conditions and aspiration pneumonia.
PML is a rare and serious brain infection caused by JC virus. This virus is commonly found in the general
population but only leads to PML if the immune system has been weakened. PML presents with similar
symptoms as multiple sclerosis as it is a demyelinating disease. If the symptoms are suggestive of PML, or if
any doubt exists, treatment with Tecfidera should be discontinued and further evaluation should be
Physicians should inform their patients about the risk of PML appropriately.
This is the first case of PML associated with Tecfidera. In the past, other cases of PML have been reported
with the use of fumaric acid esters in lymphopenic patients with psoriasis, although in the majority of these
cases, the causal relationship could not be clarified (e.g. other risks for PML were present).
Biogen Idec is currently evaluating available evidence and will work with the EMA to consider appropriate
changes to the prescribing information including further guidance on managing severe and prolonged
lymphopenia and the risk of PML. Any new advice for healthcare professionals and patients will be
communicated promptly.
Call for reporting
Healthcare professionals should report any suspect adverse reactions associated with the use of Tecfidera in
accordance with the national requirements via the national spontaneous reporting system, to: HPRA
Pharmacovigilance, Earlsfort Terrace, IRL – Dublin 2; Tel: +353 1 676 4971; Fax: +353 1 676 2517;
Website:; e-mail: [email protected].
ADRs can also be reported to the Marketing Authorisation Holder (MAH) by telephone (1800 812 719), fax
[+44 (0) 1748 828801] or email ([email protected]).
Company contact point
Contact point details for further information are given in the product information of the medicinal product
(SmPC and PIL) at
Yours faithfully
Dr Fiona Thomas MBChB
Medical Director, UK and Ireland

FDA warns of PML case with Gilenya
A patient being treated for multiple sclerosis and who had no history of using natalizumab (Tysabri) developed progressive multifocal leukoencephalopathy (PML) while taking fingolimod (Gilenya), the FDA said.

“This is the first case of this disease … reported following the administration of Gilenya to a patient who had not previously received Tysabri,” the agency said in a statement posted on its website.

The patient, living somewhere in Europe, had been on fingolimod for “nearly 8 months” when PML was diagnosed, according to the FDA. The agency stopped short of saying fingolimod caused the condition, however.

“We are working with Gilenya’s manufacturer, Novartis, to obtain and review all available information about this occurrence,” the agency said. “We will communicate our final conclusions and recommendations after our evaluation is complete.”

For its part, Novartis issued a statement indicating that the firm does not believe fingolimod was responsible for PML in this case, which it had reported publicly in late July.

“Having reviewed all available information, Novartis considers that several features of this case of PML make it unlikely to be attributable to Gilenya,” the company asserted.

Fingolimod was not the only drug the patient had been taking, both Novartis and the FDA noted.

“The patient had been treated with interferon beta-1a and azathioprine for 1 month before initiating Gilenya treatment; those medications were stopped when Gilenya was started. The patient also received multiple courses of intravenous corticosteroids for several months before and during Gilenya treatment,” according to the FDA.

Novartis said “MRI reviewers” had examined brain scans taken before the patient started on fingolimod and determined that the patient might already have had PML, because lesions seen in the scans were “atypical” in MS.

PML results from reactivation of latent infection with the JC virus, usually in patients with acute or chronic immunosuppression. The death rate has recently been about 20%.

It was first noted in patients receiving cancer chemotherapy and later in those infected with HIV. A series of PML cases seen with natalizumab after the drug was first approved in 2004 led to its temporary removal from the market.

In the current case, the patient showed JC virus DNA in cerebrospinal fluid as well as clinical symptoms, and fingolimod was stopped, the FDA said. The agency’s statement indicated the patient is still alive.

The FDA advised clinicians to report side effects involving fingolimod to its adverse-event reporting system. It also told patients currently taking the drug not to stop it without talking first with their physicians.

Source: MedPage Today © 2013 MedPage Today, LLC.(29/08/13)

3 years ago

@BillyBonza , life itself doesn’t occur without risk.

If you want to get anywhere in life, you need to cross a road. You can do this carefully by monitoring the surrounding conditions to mitigate the risks.

So, the journey through life is all about accepting risks and mitigating risks.

Yes, there are some risks that are best avoided, but life just isn’t perfect.

So, please keep things in context. In everything, there are winners and losers – don’t always concentrate on the losers, it becomes depressing! And, it can’t help you either…….

3 years ago

OMG. Stumbler, you recited a good portion of that 6 months ago I’m sure of it and that aside, you’re better than that. That is the most defeatist attitude I’ve heard. You can’t be seriously suggesting that informing people accurately about matters concerning their health and wellbeing should come second to keeping them in suspended animation in la la land where everything’s fine and dandy until…..

If its real and its of a concern to us then I want to know, and I’m sure I’m not alone, no matter how ‘depressing’.

3 years ago

@BillyBonza , realistic, not defeatist!

It’s dangerous to breath, as it is to eat and drink. Some risks have to be accepted and managed.

It’s a case of finding the balance between the good and the bad….

3 years ago

I accept your opinion Stumbler. i didn’t drop those funny comments about you for a fight, i actually really like you. Take it as flattery.

Agreeing to disagree which is gentlemanly if you ask me; my view is just that there is a genuine risk there and a trend emerging. Knowing this type of stuff, if nothing else, enables them to think from an enhanced perspective to make the best choices they can. Your neurologist isn’t going to bring these things up at your appointment so how else would you know? I’m on my third neurologist now, I’m liking this one’s style. My first appointment with him I took my folder in with me, every piece of relevant paperwork since the beginning, chronological order for ease of reference when I briefed him on the history and then into the present and what I was unhappy about and what I wanted to see happen. He agreed with every single thing I said and asked for and thanked me for being so informed and organised and matter of fact. No BS.
Back to the important topic at is core, this information has the very real potential of effecting a person’s choice along the way out of many and could very well save their life. That’s not something you should keep from anyone or omit to tell them. That is as important as it gets, think of your individual families and x that by everyone on this site and then think about how important this information can be to every single one of those people, potentially. Thats what I’m saying.

3 years ago

@BillyBonza , I appreciate that your heart is in the right place and your message is a good one.

But, sometimes, your passion and vociferousness can be construed as intimidating, especially when someone newly-diagnosed is overwhelmed and seeking some empathy.

We’re two of a kind, @BillyBonza, so mutual respect is the order of the day. 😉

3 years ago

Agreed. I must ask though to just add one tiny important thing, important to me. I am sitting in my office, so a room in a brick house in a very remote area of the Adelaide Hills Region, South Australia. You couldn’t find me with the army behind you. I seldom leave this house or the immediate garden area due to circumstances. My words from here can not hurt or intimidate anyone. They are simply my opinion no matter what you think of it. Other than that the are nothing but lines on a screen if that’s what you want them to be. They can be everything or they can be nothing the choice is 100% with each person. But there is no intimidation here with me. Only words, and a small hope of some eduction which might make a difference to someone one day. That’s my standing position in all cases. For the record.

3 years ago

Understood, @BillyBonza. I wasn’t suggesting otherwise.

I just have to protect all of our members, some of which may be somewhat over-whelmed by their life events and your …… erm, can I call it verbosity. 😉

3 years ago

You may

3 years ago

You may verbosity is exactly what it is nail on the head.

3 years ago

And yes understood. Now tell me why my emojies arent working? ;(

3 years ago

@BillyBonza , emojies work differently in WordPress. I’ll e-mail you some details. 😉

3 years ago

OMG! The scrolling function on my iPad just died and the kittens in my avatar became adults while I waded through this “literature”! I always appreciate the truth particularly when about corporate secrets that affect our lives. I also appreciate brevity for which I am not known. My favorite and I think most powerful authors seem to say the most with the fewest words. Since, I lost the use of my dominant right hand in an early attack, I always try to economize my own word choice. It can be an empowering exercise that sometimes results in a cryptic language that only I can understand. 🙂 I am glad that I have been replaced as possibly the harshest member of our editorial staff. My passion to warn unsuspecting youth being coddled by “Big Brother” as if nothing is wrong, sometimes gets the best of me. Stumbler is correct that some of them are in need of empathy for which I have plenty. But we owe it to them to openly discuss the seriousness of our predicaments which will help inform them about their best options. There are decades of pain staking MS research coming to fruition now and these “newbies” deserve to know about it. It should be presented in a kinder, gentler way though. 🙂

3 years ago

Cool. I can most definitely live with and do that. That’s a very good wrap up. I gave up trying to reduce my words. Mainly because I can’t help it, my mind just runs like Bolt, on coke, with a fire cracker up his a***. But also because I was/still am so sick of being misunderstood by trying to be dumb and keep it simple that I decided no amount of detail in a description or expression was really adequate, you know what I mean? That’s where that little saying comes from. When someone says that in their normal language all the time, like me, its because they have an filtered perception that they are generally disliked or misunderstood generally and thats why everything they say needs to be clarified with the receiver that they have been understood, you know what I mean? But what I found with more words was more of the same so, eh…. whoops its happened again, ADD alert!, I fell back in ‘the Loop’ for a moment. Thanks for the post.

3 years ago

Your message is very clear to me but definitely getting lost due to the severely over clarification attempt that tires me out. My mind has gone the opposite direction. I single thread everything and grapple for words if I take on too much. I hate having this MS imposed limiter on my cognitive skills. I am trying to get Lemtrada later this month and US-Emma spoke to her recovery of practically everything stolen by MS including cognitive skills in the year following her Lem trtmt. I hope!

3 years ago

I hope for you. I’ve stopped mine. I’m backing myself the whole way. I’ve never experienced genuine care or concern from another in this life. Only manipulation and selfishness. So I don’t have a choice, I can only trust myself. Its sad

3 years ago

I understand more than you think possible. It is sad! But, I am going to try like hell to get help this year. Have you looked into lem?

3 years ago

BTW, You are apparently on the other side of the planet and only show up as some text on my tablet. I have suffered horribly with this disease. Nerve pain around the clock. It has taken away so much! But, I still have empathy for others and wish that I could change things. This blog is the best vehicle I have found for that. You may be right about people, even most people. But there are people that genuinely care. Not too many of them in my life. The two that come to mind have MS and I have never met but have revealed such kindness and humanity that you just have to cling to it and their encouragement to have the courage to go on. Even if you are right, that attitude is very corrosive and you need to let go of it. IMO

3 years ago

I have but not in as much detail as I need to yet. I have not formed an opinion yet. I don’t want to throw it in with the rest of the DMDs ‘categorically’ in ignorance. I’ve seen the very positive accounts and that weighs heavily. However I am still hesitant and remain skeptical. Reasons:

– because I don’t hear enough screaming and shouting that we can all breathe a sigh of relief, not enough ‘noise’ about how good it is;
– If I were to generalise, its a suppressant too so its bad news categorically (again this is just me for myself). I have JCV and an index value right in the danger zone, for who knows how long, so I ruled out all suppressants, especially because it’ll mean changing from one i was taking to another, bad x 2;
– I don’t like the tone of the official literature on it, it sounds a little sinister especially all the business about how it seems to stay in your system attached to blood cells for 4 years and you have to be monitored for that long for any potential negatives? That’s by vague memory which is bad.

So I guess my summary gut feeling is there hasn’t been enough time to see if there is any major fallout yet and in the meantime its a suppressant so its not doable for me.

3 years ago

I don’t know about that so much, corrosive. In everything that exists there is Yinyang, the balance, cause and effect. I am effect. If thats where I draw my resolve, my determination, so be it

3 years ago

And personally, I require first hand kindness and humanity to believe it. I need proof. Otherwise its just more tricks, more hot air, more hurt. Nothing but first hand action will ever convince me otherwise

3 years ago

Too much info that addresses your fears to share here. I had a lot of skepticism as well until I learned what a cess pool of politics make The whole Healthcare system go round. There is BIG money at play and numerous ways that screws up everything. There is more than 2 decades of testing and use of campath to ignore the data. But I have seen how counterintuitive the reaction is to the message that there is real help and firsthand testimonials from medical professionals with MS themselves that have been roundly ignored and propagandized on this very blog!

Checkout this guy’s writings.

Check out this blog written by our very @us-emma. She is a nurse practitioner in the States. Talk to her about your doubts. She went to Germany with an MD with MS and others. I have a close friend who is a RN in the States with MS That participates in the trial with Dr. Hunter who was wheelchair bound and now walks 4 miles a day. Medical professionals seeking this treatment for themselves. It is a strong message to me.

3 years ago

Thanks for that. i will absolutely look at it in painstaking detail next Loop I get on. I know what you are saying about the information, how it is received and manipulated along the way for all sorts of reasons, competing interests, corruption, MONEY. You are talking my language there. You hit the heart of why I always try to proceed with as much knowledge as can still fit between these ears and with a healthy overdose, I mean degree of skepticism. I have to acid test everything. Its very time consuming and tiring and can become very boring. I’d rather be out flying a kite, or getting high as one. 🙂

3 years ago

I did not just discover Lem. I have been studying everything available for 3 years and almost made it into the trial. I have written the regulatory committee to protest their rejection of Lem by the FDA. I joined thousands of US MSers to overturn their ruling to make the biggest thing to come along ever for MS. Do you think that might line up the competing DMD Pharmas and their alliances? I see how it works firsthand even at the local level. My neurology institute prefers Biogen products who happens to be 10 mins away and also caters the entire staff of a large institution daily, because our government forbid them from giving out gifts like pens and calendars. You can’t make this stuff up! I am insisting on lemtrada and will be fighting them and our private insurer. I will travel anywhere and pay to get it. you have your homework assignment! When you finish, Tell me why I am wrong! 🙂

3 years ago

I too have waded through these posts. What can I add? Just that one of the worst things that this illness can do is to make ourselves and the condition the centre of everything in our universe. Of course, it is in one way – if we don’t look after ourselves, no-one else will. Informing ourselves of the latest drug developments, working constructively with our neuro team, living as healthily as possible we’ve GOT TO DO, no question. And having done all that … it’s time to put MS in its box. It’s a huge box. It can pop out of the box unasked. But it’s a box within me. It’s not who I am.

3 years ago

Check. You run a very very convincing summary argument and touch on every aspect of dodgyness in the right way that I can think of right now. I will research and prepare my thesis setting out my conclusions:) I suspect I won’t be able to refute you but I wont know for sure until I’ve gotten my hands dirty.

Yes if there was any doubt, there shouldn’t be, the BigPharmas are absolutely in alliance or maybe thats not the right word, they have an unwritten MOU not to portray each other negatively or compete openly as such. They don’t need to compete, they can all get paid there’s no need to squabble if they cooperate they have a monopoly and they all win, and only them. Thats why they avoid doing head to head trials comparing drugs at all costs.

3 years ago

Hi Cameron, what can I say, MS is as far from who I am, as it gets. So I agree entirely. Who I am is a pot smoking hippie (who resembles a hippy in no way) who just wants peace and love and happiness for all. Seriously, I’d be happy spending the rest of my days rolling around in silk sheets, wearing them too, with the munchies and a dooby or 50 and a lovely, voluptuous, carefree hippy chick. Then I could lay on the grass, sit in the sunshine, watch the butterflies and bees do their thing, listen to the birds sing and look for funny shapes in the clouds, tend to my crops, errr did I say that.

So any contrast or contradiction here in this BillyBonza equation, or what is X? X is the world and what I’ve had to deal with, within it in life.

3 years ago

One more bit of info: I participated in the clinical trial for BG-12 (tecfidera). These pharmas go out of their way to set the bar as low as possible in making claims and disclosing even if someone catches a cold so that they can stay clear of liability issues and pass regulatory approval. I mention it because of your referral to their web presence. It is all about ass covering and no claims that cannot absolutely be demonstrated. I have taken what you may know as fampyra long before it was formulated and released as an mS symptom drug. I took a compounded version I paid $80/month for that was a bloody miracle drug for me. It is a common bird killing agent that they found in smaller doses helped “patch” the leaky myelin temporarily. Five years later a timed release version was approved for reducing the amount of time by a couple of seconds in a 25 ft walk. You can’t make this stuff up! My MIRACLE drug that made me almost feel normal was reduced to that to get the simple bird killer approved as a walking aid for mS. Hardly anybody knows how great it can be for you as a result. People here could care less to hear about it. I was desperate for something to help. It is weird!

3 years ago

Funny shapes in the clouds! That’s perfect!Well Put!

3 years ago

🙂 thanks.

Sorry mbrsinc, I don’t understand what you mean re fampyra? But I want to, sounds interesting. On the tec, yes I understand that all too well, but colds are not death by PML. And they do offer that ‘transparency’ you refer to, to assist in helping themselves in FDA approvals, the ‘good son’ that they are. And why do they put such importance on ensuring their approvals as and when they need them? Forecasts, money, planned and structured business accounting, presentations of surety and ‘guaranteed’ earnings for investors. Here’s a private Convertible Bonds share offering in the company, we just diluted the value of all existing shares held by public investors to make way for you. Invest $10M and after the 3 year non-conversion period, you can cash out $20M.

Tell me I’m wrong about that.

3 years ago

@cameron, you might change your mind when you are screaming at the walls with inconsolable nerve pain. More than 50% of MS patients experience severe pain. I thought I knew about MS previously and might have even quoted that same tired saying. Pain changes all! Then MS becomes more than a inconvenient visitor!

3 years ago

@billybonza I looked it up. This will help big within days if it is going to. It does not work for about half that try it.

You r correct sir! I am a day trader now that MS ended my SW engineering career. Your stock analysis is right on!

3 years ago

Hi mbrsinc, yes I was aware of fampyra as an available drug, although admittedly I had not delved into it any further than essentially what you just provided to me. I was really more on about the bird killing agent? I want to know about that, I like chemistry, its honest. The reason why I just glazed over fampyra as an option for me was because of the renal insufficiency or failure risk. My mum had one kidney removed maybe 8 or so years ago, stab in the dark on the time frame there, but yeah, and her sister, my aunt, is without any exaggeration, on deaths door right this minute due to kidney disease and complete renal failure which she has suffered from for it must be over 10 years and she’s been having dialysis like 3 times a week for I guess that whole time. I used to go in a chat with her while she was having dialysis just on the very odd occasion just to say hi and keep her company because she always said how f**** boring it was waiting while it was done. Plus I didn’t like seeing it, scary. But anyway sorry, started slipping again.

So yeah the kidney thing was principally what ruled it out for me but the was some small auxiliary issues. I also think there could be an issue with prescribing that to me here because its for ‘walking impaired patients’ specifically which i presume they defined somewhere, but I don;t know if the neuro would categorise me like that because while there are days that for some reason I can not walk without excruciating pain and hobbling like ******************** 🙁 (sorry) if I tried anyway, which I can’t because it hurts so bloody much. Then the next day what am I doing, bloody walking. I love walking. Am I ‘Walking Impared’ I don’t know.

Yes, I know, if I may spread my wings momentarily. I worked as a Paralegal for 12 years or something, I worked at 4 different firms in my time and two of them in particular acted for parties with interests and disputes in some of the biggest most valuable matters around the world, billion dollar clients. And in the other I worked for many banks and financial institutions taking instructions directly even in my lowly role (it wasn’t at all, it was intense, anyone who knows anything could tell you to trade 3 lawyers for a good Paralegal is still a bad deal :)). So I picked up some **** there.

3 years ago

All they do is time you walking 25 ft. They don’t care if you limp or not. Just walk slowly. That’s it. You pass! It is a bird killer because it causes undesirable birds in dangerous locations (like airports, city centers) to have seizures. It can cause seizures in humans at high doses. It’s not the first medicine that doubles for something not so nice. I have been up all night and cannot think of other examples and don’t feel like looking it up:-) The kidney angle is definitely important. (But I don’t care b/c I get paid by Biogen.) Gotcha!!:-) I would be very careful to make sure not to risk kidney problems. I am older, but not ancient and my business partner died recently of kidney disease. That was a shocker! I would make sure to regularly monitor my kidney function if I had your history. But halting MS would definitely be a priority. I have confidence in you!

3 years ago

Thanks. Very kind. See I’m not so bad sometimes. And I don’t know about you being former harshest Administrator (what you said) either;) speaking of which I wonder where current harshest Administrator got to? ;););)

3 years ago

Really cool avatar! It fits 🙂

3 years ago

😉 ive got 2 funnies for you.

1. One of those birds got trapped under my pergola the other night and was flying into the glass windows in a panic. It was young like teenage equivalent but big, big enough. So of course I had to help it. What a fu**** ordeal that was. Im sure it looked hilarious at moments if you werent me. But mission accomplished.

2. This is only funny becuase its about me so I can say it. But what I was saying about the kidney history in my family, man my genetics really is so far up the creek you just have to laugh. You know when something is so ridiculously in excess that its funny? Kidneys mum and aunt, grandpa dads side had type 1 or type A I can never remember diabetes from about 12 years old, stroke in his 40s wheelchair, died in his 50s. Grandpa mums side bowel cancer but had it removed and lived happily for a long time more maybe 20 years even but in the end bells paulsy (I dont really even know what that is I just know the name, maybe, spelling?). Um, other uncle with cancer who died but he wasnt my blood relative so I cant inckude that. Yeah there could be more but thats a list in itself. Im f*****! 🙂 hahahaha seriously its a little bit funny no offensive to the dead intended. Its ridiculous really

3 years ago

Hi mbrsinc,

ok I’ve had a look at your suggested reading and more, I hesitate for fear of upsetting you and your opinion on this but here we go, I’ll try keep it simple:

1. I don’t trust, believe in or like the sounds of a single word Dr Hunter has to say. That blog link of his, he sounds like a total quack, its a whole pile unscientific, poorly presented, unsupported generalised load of crap. I saw at least 2 spelling mistakes or words in sentences omitted and I wasn’t even looking for them. To be honest I started ADD skip reading him because it became clear so quickly there is no substance there. He skips over the serious detrimental side effects like its nothing? Just a pesky thyroid issue, don’t worry about it, you might only have to had chemo or radiation therapy or whatever, all as good as each other. 20 years of research data? Where, show me, what research, what people, what data? He sounds like a door to door insurance salesman.

2. Its clear Lemtrada can have amazing and fast effects for some people. On the other side of the coin that’s not most people by any stretch and for the others who don’t get good results, the bad results are as usual, unacceptable. I’d rather be just like I am. I used to like gambling. If we were sitting at a casino and you presented these odds to me and gave me the values of winning or losing I would walk away laughing and go back to blackjack.

3. Nothing about anything to do with Lemtrada addresses the real issues and concerns I have raised about PML, long term effects especially as it survives so long in the body, so have your infusions and then they realise there’s something not so good about it and too bad your already 4 years deep even if you only had your infusion 6 months ago. ie you can’t just stop it if you needed to, its in you for 4 years rain or shine. And also what I was saying about using multiple suppressant drugs on top of each other, that’s still as big of a concern as ever, actually I think more so.

4. An added negative in my view, it wipes your immune system clean to ‘re-set’ it. Like stem cell therapy in a pill? Why hasn’t stem cell therapy exploded besides the fact it costs ridiculous amounts of money? Because we as animals have been building that natural defence system of the body over millenia. No one knows what shutting it down and restarting it really does. I think it sounds like the most unnatural thing conceivable and considering the hesitation that seems to be around on the stem cell thing I would say I’m not the only one. I think its a really bad idea.

5. I completely agree now more than ever that anyone and everyone who either has a part in this MS game or wants a part is bias, self-serving, driven by greed and money alone and all happy to manipulate and lie and do whatever it takes, tear each other to pieces for their interests and that extra buck. That includes all regulatory bodies, insurers, governments, doctors. It makes me so angry I can’t begin to tell you. No one can be trusted, no one, they all have an agenda and no ones agenda is our health or well being. I already did and now I do even more, I HATE MONEY! Call me whatever you like, dark, depressing blah blah blah. The truth is the truth, I hate it as much as the next person, but I won’t ignore it. I can’t.

6. There is still no evidence of long term use when you add in concerns like multiple therapies, past medications, JCV or the myriad of other viral infections it can trigger.

That’s enough. Sorry friend. I want to believe it, I do. I want one day for someone to show me something like this and I’m just blown away at how real and promising and good it looks and then run to my neurologist begging for my script. But this is not that. It could actually be the worst thing yet.

I apologise also to those with their good news stories about Lemtrada, I don’t wish to sour your accounts of positive real life experience in any way. I would also suggest to others to look at the positive stories rather than listening to me.

For me, my life and in my opinion, it’s just more of the same and that’s nothing good. 🙁

Again I’m sorry I just call it how I see it.

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