Well, I'm still in recovery mode from my last failed attempt at trying a new MS med. For all of those who have inquired, no, the medication was not Tecfidera, so if you have recently started the drug, no cause for alarm. The med I tried is not used all that often to treat MS, and I had a very atypical reaction to it (naturally). I'll provide full details in my next post, which I will put up as soon as I'm feeling better. Just a teaser to keep you interested: the drug costs $150,000 for a three-week supply, and I was only able to use about one week's worth. So, I have about $100,000 sitting in my refrigerator, just taking up space and doing nothing to help anybody. Way to go, Medical Industrial Complex!
In the meantime, I'm reposting the following piece, which first appeared on Wheelchair Kamikaze way back in 2009. It generated lots of comments back then, and I hope current WK readers find it just as interesting. Please stay tuned for a new post, coming just as soon as I'm feeling up to it…
For the last few days, I've been pondering a thought exercise that recently popped into my mind. Imagine, for a moment, that an almost miraculous cure for MS has been discovered, one that can alleviate all MS symptoms with a single injection. A patient simply has to go to their doctor's office, get the shot, and, voilà, 24 hours later they are completely symptom-free, their nervous systems restored to pristine condition and their general state of well-being suddenly better than even before they were diagnosed with Multiple Sclerosis.
Great, right? Sign me up!
Only, there's a catch. This "cure" comes with a terrible cost: after a certain amount of time, every patient treated with this injection dies painlessly in their sleep. In the "X" amount of time before they die, the patient remains in the full bloom of health, right up until the night they go to bed for the final time. The question, then, is what would be the minimum duration of guaranteed health that would entice you to take the shot? In other words, would being restored to perfect health be worth it to you if you knew with utter certainty that you would die in six months? One year? Five years? 10 years?
Would you be willing to trade a full life of chronic illness for a blissful time during which you would be completely unshackled by the chains of Multiple Sclerosis? For a time free of fatigue and cognitive dysfunction, of muscle spasms, spasticity and paralysis , of bladder and bowel issues, of the constant daily struggle of dealing with the rigors of this miserable disease? An interval during which you'd have no reason to even think about braces and canes and walkers and wheelchairs and MRIs and neurologists and lesions and a medicine chest full of pills that hardly even seem to matter? When you could walk and run and dance (dance!), drive and play and travel, and finally, finally, once again be that fully functional man or woman that you used to be, that you've dreamed of being since the day MS started taking its dreadful toll?
How many months or years of restored health would be enough to entice you to undergo a simple but profoundly effective treatment that carried with it the ultimate price? Of course, the answer must differ for each of us, based on our own current state of disability, our rate of progression, the level of our misery, and the amount of hope we have that a cure, or even a truly effective treatment, can be found in time to help us. The flavor of the disease a patient suffers from also enters into the calculus . Folks with relapsing remitting disease that is currently being managed effectively by disease modifying drugs might reject such a proposition out right, while patients with progressive disease, especially advanced progressive disease, would probably be much more open to trading longevity for a period of perfect health.
Certainly, marital status and family situations factor greatly into the equation. Single people, or those without children, might be more willing to sacrifice longevity for a chance, though brief, to be healthy once again. For those who are married, and especially those with children, the calculus gets infinitely more complicated. How much time with a healthy parent would it be worth for a child to then lose that parent? Difficult questions all, and ones I think reach to the very core of our beings.
Personally, after much thought, I think I'd put my "X" at somewhere around a year or a year and a half. If a physician approached me with a syringe, and told me that the injection would guarantee me 12 months of perfect health, but at the end of that 12 months, I would die painlessly in my sleep, I would give the offer serious consideration. Of course, I'd want more time, all the time in the universe, but this thought exercise requires that we consider the absolute minimum amount of time we would settle for.
One year would give me time enough to experience all of those pleasures in life that I now miss so terribly, to travel to the places my wife and I have always wanted to see together, and to spend time with those who I hold closest to my heart. I don't have children, so that's not a consideration. I do have hope that stem cells offer real promise as a treatment, but I'm unsure that this promise will be fulfilled in time to help me. I have my doubts about many of the avenues currently being explored by MS researchers, and though strides are being made, I'm uncertain that the mysteries of MS will be fully unraveled anytime soon, and given my rate of progression, soon is the only timeframe that really matters to me. In addition, there is now question as to whether what I have is even really MS, and what chance is there that some mystery illness will be solved before it puts me into a state I deem to be simply unbearable?
So what about you, dear reader? What's the minimum amount of time for which you'd be willing to trade your life for perfect health? What's your "X"?
I'm not as far along the path of this disease as you are. As of right now, I'm able to manage mine with the use of (currently) Tecfidera and randomly getting a 3 day solu medrol infusion any time I have an exacerbation. To that extent, I don't think I would be willing to take a miracle drug like this at all.
ReplyDeleteSo instead, I want to offer you another challenge. It's your question, but with a new twist thrown in for fun. Assuming that you would be willing to die after a year of perfect health, what if another drug could promise you 5-10 years of perfect health prior to painless death, but there was a 10% chance that during the first 15-20 minutes of the drug entering your system, you would become brain dead with no possibility of revival.
Would you still take a drug like that? I don't want to get into money, so maybe it would be free to take this drug as a clinical trial. What is the lowest amount of time you would accept of an MS-free life, if there was a 1 in 10 chance that taking the drug would kill you right away?
Very interesting twist on my original question. If "your" concoction would indeed offer 10 years of perfect health, even with the 10% instant mortality risk, I would take it without hesitation. For a healthy duration? Given my current rate of progression, I would certainly consider something as short as one year. The increased risk might not even be a factor.
DeleteFunny thing is, I wrote this post four years ago, and said that I would take one year of perfect health knowing that I would die painlessly afterwards. Well, the intervening four years haven't actually been all that bad. I've learned that the anticipation of the future is usually worse than the actuality. That said, at some point the amount of disability would severely impact quality of life, but it's hard to judge just when that juncture will occur. Certainly, I'm closer to it now than I was four years ago, but I'm pretty sure I don't have another four good years left in me, barring some sort of successful medical intervention. Long story short, the calculus involved in such a decision is extremely complicated.
1 year would be great I I have ppms for about 12 years and would take ANY chance to have a normal life - even the Jonathan-version
ReplyDeleteAs I said above, I am pretty much in full agreement with you.
DeleteWith advanced PPMS mine would be 2 years, 2 months, 1 week (through the holiday season),
ReplyDeleteI appreciate the precise nature of your calculations. Thanks for commenting…
DeleteWith secondary progressive after rrms diagnosed in 1996, even 6 months is good.
ReplyDeleteI certainly understand where you're coming from. The idea of even one healthy day has incredible allure . There's a lot that goes into coming up with your "X". Nobody can judge anybody else's decision-making process…
DeleteI remember when you first posted this, and I think I responded. But I can't remember what I said. It would be interesting to know, because my MS has progressed to Secondary Progressive and I think a couple weeks would be worth it. No, maybe longer. Because I'd want to divorce my husband so he wouldn't be saddled with any debt I racked up in my 2 weeks of perfect health. I'd do it all - I'd go to a hot, tropical paradise for a couple days. I'd ski for a couple days. I'd ride a motorcycle again. I'd walk shelter dogs. I'd travel alone. I'd work out heavily. Ahhhh, it would be so worth it. And then a painless death? Wait, is this considered suicide? Would it be considered a sin?? Crap. I may have to rethink it.
ReplyDeleteSue, I looked back on the old post, and couldn't find your response. You must have responded as "Anonymous" back then.
DeleteOf course, I can't really answer the question as to whether this would be considered suicide. Personally, that's of no concern to me, but I understand how others might find it the overriding issue. Were the fighters who killed themselves at Masada considered sinners because they took their own lives rather than be taken by the Roman soldiers? Not sure that there're any definitive answers when it comes to things like this…
Mark, Hope you feel better soon!
ReplyDeleteLet me outline a different scenario which has been shown to work recently in EAE mice. (http://tinyurl.com/calcitriol-D3)
** The treatment stopped the disease in 100% of the mice.
** It did so more effectively than steroids.
** 100% of the mice remained in remission for the duration of the study.
** And, by the end of their study, they were wagging their happy little tails that were paralyzed and walking again on legs that were paralyzed.
The treatment used a single dose of a compound which is a pharmaceutical version of the hormone that controls the adaptive immune system and and over-the-counter vitamin.
As such, rather than suppressing some part of the immune system, it supported it and effectively reset it.
The treatment was a single, very high dose of calcitriol that costs around $150. Calcitriol is the bioactive form of vitamin D and as a pharmaceutical used in kidney patients has been around for over 20 years. There are some risks, but they are well known and manageable.
After the single dose of calcitriol, the mice were given a moderate daily dose of Vitamin D3, the equivalent of around 4,000 IU, well under the upper safety limit.
So far, this has only been tested in mice with EAE. It hasn't been tested yet in humans and it may not work, work as well, or work for all pwMS, but . . .
For the cost of the drug that has made you sick, 1,000 people could have tried this.
The main risk of high dose calcitriol is hypercalcemia, but the risk is minimal because the treatment is based on a single dose of calcitriol which is out of your system in 6-8 hours.
The potential benefit is that it might stop disease progression completely, keep it in remission, and allow for full recovery of lost function over time.
So rather than asking how long you would want to live if a doctor offered a cure that would kill you, I think we can now ask how long are you going to wait before testing calcitriol + D3 which just might be able to stop progression, keep you in remission and allow you to recover full function over time?
Thanks for your comment, Edward. I've read the calcitriol research, and I've got to say I'm much less enthusiastic about it then you are. First of all, the mouse model of MS, EAE, is a HORRIBLE model of the disease. There are innumerable studies on a wide variety of compounds that seem to cure EAE, but the vast majority have proven to have little or no effect on the human version of the disease.
DeleteEAE is actually an allergic response in mice, triggered by the injection of myelin proteins into their bloodstreams. This in no way replicates the disease process of multiple sclerosis. Much has been written about the problems with EAE, and there is growing scientific consensus that much of the research done on mice induced to have EAE is practically worthless.
Does this mean that calcitriol/vitamin D3 has no chance of being an effective treatment for MS? Of course not, but the chances are very, very slim that the efficacy of such a treatment would be anything close to what was seen in mice. There have been trials that have given human beings high doses of vitamin D3, with very little benefit to show from it.
Most studies involving vitamin D show that a lack of vitamin D early in life may predispose people to get MS. So far, there's very little evidence that giving people with MS high doses of vitamin D has much effect on the disease.
I certainly would encourage MS patients to make sure their vitamin D3 levels are in the high normal range, but to expect that the treatment described in the Calcitriol /D3 research would be a "cure" for MS is most likely folly.
Marc, I'm a bit more optimistic because the reasons this worked in EAE are the same in pwMS. There are high levels of pro-inflammatory CD4+ T-cells in both EAE and MS. The only explanation for high levels of 25(OH)D3 not working is that it is not being converted to calcitriol and this problem has been documented in humans with a number of other auto-immune diseases and most likely is true in MS. The pro-inflammatory cytokines are immortal without calcitriol and Hayes shows that making it directly available causes them to decrease while anti-inflammatory cytokines increase.
DeleteBut of course, we will only know if it works in pwMS when it is tested in people with MS!
Marc, meant to also comment on your statement that "There have been trials that have given human beings high doses of vitamin D3, with very little benefit to show from it."
DeleteThis was the puzzle Hayes set out to unravel. VitD3 alone was ineffective in EAE while calcitriol stopped the disease.
This latest study is a major breakthrough because it shows why this happens.
D3, or more precisely 25(OH)D3 has to be converted into calcitriol, the bio-active form of vitamin D to have effect. If something blocks that conversion, then D3 has no effect.
There are several studies in other diseases showing the an aggressive immune response to infection or injury causes an increase in TNF-alpha and IL-6 which block the conversion of D3 to calcitriol.
That effectively makes pro-inflammatory cytokines immortal. They do not undergo normal programmed cell death without calcitriol.
By giving a single dose of calcitriol to increase CSF levels, these pro-inflammatory cytokines then undergo programmed cells death stopping their destructive activity and in essence, halting the disease.
If anything, all the trials of D3 that have shown limited effect are a good indication that the same problem that Hayes observes in her EAE mice is true in MS and my reason for optimism that the protocol may well work in pwMS.
Food for thought gentlemen;
DeleteMS because of the function/dysfunction of the CYP27B1 gene?
28 October 2013
This may not appear to be big news at first glance. The study has links to MS because of the function/dysfunction of the CYP27B1 gene.
Mr Edward Murray provided me with knowledge below which to my way of thinking is a key factor in MS and degenerative diseases.
If you have low calcitriol, as studies have shown in the CSF of PwMS, you have problems when there are breaches of BBB and immune cells such as CD4 and T cells are able to cross in volume. The CD 4 cells are the cells that are clean up dead cells, pathogens, etc who can also tag and eat myelin which is where the demyelination occurs in MS brain lesions.
So it appears that the boosting or pulse of a dose of calcitriol has the effect of restarting the apoptosis of immune cells that have crossed the BBB and stopping the damage in the CNS. It also kick starts the repair of the breach to the BBB.
So the Trial and study that Ed has proposed has HUGE potential, what it needs is support of all kinds, most of all PwMS asking questions and spreading the concept so that the research can commence! :)
*****The CYP27B1 gene converts D3 to calcitriol.*****
CYP27B1 is the gene that manages D3 to calcitriol production. As far as I know, it has that sole function.
When the cell needs calcitriol and it isn't available in the blood if on
the body side of the BBB or from CSF if it's in the CNS, then CYP27B1 is
activated to make it from 25(OH)D3.
Calcitriol itself is directly involved in cell repair. It calls in the
necessary immune system cells. It sets off the cell replacement cycle so
it is at the heart of effecting repairs to the BBB.
It is generally quite aggressive about this since leaky pipes are a
major, life-threatening problem.
Anywhere there is a problem with the endothelium, epithelium,
neuroendocrine tissue (lining of the gut), calcitriol is what manages
the repair.
Two main components of the repair are activating the immune system,
replacing damaged cells and starting the process of building a
scaffolding for cell replacement by activating fibrin. All that is
controlled by calcitriol working through, on and with relevant cells of
the immune system, fibrin floating around in the blood and so on.
Calcitriol directs final differentiation of blood vessels during
development as well as things like bone, skin and the lining of the gut,
bladder and so on. As the builder of all these things, it is also
responsible for maintaining them.
Anywhere there is a problem with the endothelium, epithelium,
neuroendocrine tissue (lining of the gut), calcitriol is what manages
the repair.
Two main components of the repair are activating the immune system,
replacing damaged cells and starting the process of building a
scaffolding for cell replacement by activating fibrin. All that is
controlled by calcitriol working through, on and with relevant cells of
the immune system, fibrin floating around in the blood and so on.
Calcitriol directs final differentiation of blood vessels during
development as well as things like bone, skin and the lining of the gut,
bladder and so on. As the builder of all these things, it is also
responsible for maintaining them.
Recently released study of one example of the gene involvement in degenerative disease;
CONCLUSIONS:
The present data provide evidence that common inherited variation in the vitamin D metabolism affects susceptibility to type 1 diabetes.
http://www.ncbi.nlm.nih.gov/pubmed/17606874
Sign me up for the calcitriol+D3!!!
ReplyDeleteSend me an email address at cplusd -at- squeakycat.com and I'll send you the papers to back a test of this. You will have to persuade your GP to order the appropriate tests and write the prescription for calcitriol. It would be better if we could get a proper clinical trial organized and paid for, but I fully understand why some may not want to wait for that to happen.
DeleteUnfortunately, proper clinical trials on humans will very likely never happen, for the simple reason that there isn't a large amount of money to be made using Calcitriol and vitamin D as an MS cure. Don't forget, big Pharma funds the vast majority of research in the United States, and those funds only go towards treatments that have the potential to reap huge profits. Not a conspiracy theory, folks, just the facts…
DeleteAs I said above, I would advise tempering any expectations based on research done using the mouse model of MS. I'll repeat what I said above, the mouse model of MS is a HORRIBLE mimic of the human version of the disease. Sometimes it seems that even staring at mice with EAE seems to cure them…
There certainly won't be money made off this treatment. The raw calcitriol is available at a cost of $1.67 per dose and the treatment calls for a single dose, although it may be necessary to repeat that.
DeleteBut I am optimistic that this will be tested. There is already some movement toward doing a small, pilot safety trial and there is certainly a lot of study of vitamin D3 so I would expect that as more researchers review this study, they will understand why D3 does not move the needle significantly and will likely want to see if calctriol + D3 does.
I do not disagree that we should not be overly optimistic that what Hayes shows in EAE will work in humans until it has been tried in humans, but one other point regarding the study.
DeleteHayes directly compared calcitriol + D3 against standard methylpred steroids and found it to be superior in many ways. She also looked at the literature on testing in EAE of three mainline DMDs, Tysabri, interferon beta and Copaxone and shows that calcitriol + D3 was better on all measures. I put together a table with this comparison here: http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14805-615.html#p216108
Would a Share Market crash caused by the collapse of Drug Manufacturers be that much of a negative though?
DeleteHaving Healthy people who have recovered from a variety of 'auto-immune diseases' appeals to me, what about you Marc?
Marc, so many things about this post bother me, but the thing I can't get out of my head is the obscenity of a drug costing $150,000.
ReplyDeleteThis has my brain trapped in an image of a special hell for pharma execs and sales reps modeled on Plato's concept of hell. His vision was of a place where those who were judged to have done evil were made to face those they had wronged in life over and over for 1,000 years.
The image I have is that as these pharma execs and sales reps arrive to be judged, they are immediately stricken with MS and sent to a special room filled with sour-faced neurologists.
The pharma execs and sales reps circle the neuros endlessly. As they stop in front of each, the neuro pulls a long face and wags his/her finger and admonishes them to "take your meds or you will end up in a wheelchair."
Of course, they are all already in a wheelchair since they have a very aggressive form of the disease.
On the last round of the circle of neurologists each day, they are told that they have converted to progressive MS and there is nothing that can be done for them.
After they retire for the night, they are immediately awakened and told they are going to get to test a promising new MS drug that only costs $150,000.
After an infusion that knocks them flat, a nurses asks if anyone told them that this miracle drug may cause PML? But not to worry because the staff is very experience at treating it. So advanced in fact that they are able to save everyone.
And not only save them, but prevent them from bilateral drooling which isn't bad for someone with the brain of a turnip. They should be thankful that they got to test a drug with so much promise (according to Wall Street ANALysts) and only drool out of one side of their mouth.
Plato's evil ones only had to endure this for 10 times their life span which he estimated at 100 years.
I think in this case, a different formula might be appropriate:
** Ten years for every year they sold an MS DMD, plus
** One year for every dollar over say $12,000 in cost of the drug they sold times the number of patients treated plus
** Ten times that for any drug selling above $24,000 a year.
I KNOW that pharmaceutical companies need to make money to pay for the R&D expenses they can't fob off on government and private patient groups such as the National MS Society, but $150,000 still seems obscene, rank exploitation of those unfortunate enough to already have to bear the burdens of the disease itself.
If you think the $150,000 price of the drug that was given to me is outrageous now, just wait till you read my next post, recounting my experience.
DeleteJust a little teaser: about 15 years ago, you could get the same exact drug for about $1000. Pharmaceutical company shenanigans have jacked that up to $150,000. Unbelievable.
Look forward to your post! There is something inherently evil in taking an old drug and dramatically increasing the price while withdrawing the less expensive drug as has been done with Tecfidera and Campath. At some point, a health care system that allows this sort of thing will come crashing down on itself.
DeleteSorry to go on about this, but I just got pricing on a dose of the calcitriol. The raw calcitriol will cost $1.67.,Of course, that doesn't include the cost of dividing it up and putting it in a gel cap or shipping and handling, But, if it is shipped by Amazon with a $35 annual supply of vitamin D3, it will qualify for FREE shipping!
ReplyDeleteHello Marc, hope you will feel better soon. Frankly, you post the most valuable and reliable insights into ms treatment, medications and the disease itself I have ever found. Thus, I read your blog for some years now and cannot imagine it will end. The only drawback is that it is not easily accessible to patients in the country of my origin (Czech Republic, thats the source of errors in my english I for sure have in this text). However the knowledge of english among ms patients here is increasing fast.
ReplyDeleteBut the more important thing I wanted to ask you is whether you have read the new research into the bacterial origin of ms motivated by the first detection of a specific bacteria Clostridium Perfringens type B in an ms patient (being also the first ever detection of this bacteria in a human)? The research article is here:
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0076359&representation=PDF
Given the fact that the group that identified this bacteria and pointed out the hypothesis is from New York, do you know anything about a study trying to confirm this? What do you think of this hypothesis and research anyway?
Thank you very much and sorry for my english,
Petr
When I was working as a research nurse 10 years ago, I learned that only 20% of the drugs going through the research process ever make it to market. The pharmaceutical companies do not get any compensation for the majority of drugs they research, so these costs are added on to the drugs that are successful. They always need to have something in the pipeline, otherwise, when another drug comes along from another company to replace their cash cow, they are out of business. No, I don't feel sorry for Big Pharma, but I understand the cost of doing business is very great. $150,000 for 3 weeks of treatment is mind-boggling. Marc, did your insurance company pay for the drug?
ReplyDeleteMary Beth, It would be easier to feel some sympathy for the pharmaceutical companies if they in fact bore all the costs of research. But they don't. The lion's share of the high risk research is funded by government and private groups such as the National MS Society and the benefits accrue solely to the pharmaceutical companies and their shareholders.
DeleteEdward, in my estimation, the high risk research is not as expensive as the Phase III trials that actually bring drugs to market. The amount of patients and the high volume of data required is massive. Every side effect is measured, rated and followed from beginning to end. I still don't feel sorry for Big Pharma, but they are putting big bucks out there.
DeleteHere's also a few links that summarize the results of the recent study on Clostridium Perfringens type B mentioned by another poster. The science behind this is pretty intriguing and does tie in with other research done in recent times about the inner workings of the gastrointestinal system and the immune system breakdown:
ReplyDeletehttp://weill.cornell.edu/news/releases/wcmc/wcmc_2013/10_16_13.shtml
http://www.medicalnewstoday.com/articles/267676.php
Based on this change in scientific thinking, it's interesting to think about the type of therapies that might be developed in the future (probiotic cocktails vs. vaccines, vs. other drug therapies). Maybe this will push science to move a little quicker in a different direction rather than just focus on ways to turn down the autoimmune system.
In my opinion the most intriguing thing about Clostridium Perfringens type B theory is that it is able to explain almost all the facts known about ms that other theories (including the mainstream autoimune) cannot. E.g. ms clusters, "exaggerated cleaniness" hypothesis of ms origin and so on. Furthermore, this infenction is long known to be present in animals, mammals like cows, sheep, rodents etc. And the symptoms of this disease in animals is instability, motoric problems, vision problems and others that we are all very familiar with. Furthermore, in animals this infection (or more specifically overdose by this bacteria) is treatable and they are also vaccinated against it. Finally such a hypothesis of the origin of ms in humans was proposed back in 1986 (this disease in animals has been known since 1930s) but was not researched further particularly because this specific bacteria was until now never detected in humans. This hypothesis seems to elegantly identify the primary trigger in ms and the origin and randomness of relapses in rrms. It also explains why nutrition, fecal transplantation work for some ms patients.
ReplyDeletePetr
Petr - Thank you for sharing this information. I had not heard of fecal transplantation and after some research, I find the idea fascinating (and repulsive). You write in English better than many American people. Mary Beth
DeleteThank you Mary Beth for the compliment. If I my english is acceptable in the written form (probably the result of occasionaly writing articles on physics which need to be in english) you have definitely not heard me speak english, that is even worse.
DeleteHowever, fecal transplantation, though it might seem repulsive, is nowadays used as a treatment for bowel diseases like diarrhea and is much more efective than the best antibiotics. It is also tested for Crohns disease etc. I like the most on the C. Perfringens theory its apparent simplicity. No strange hords of genes or mysterious autoimunity (which is used by doctors because they have completely no idea what ms disease process originates in but feel ashamed to admit it). Just a bacteria which is always present in our environment (this is why relapses keep coming and cannot be in principle stopped), a bacteria we simply just haven't seen in humans so far. Just our blindness, simple explanation. :-)
Petr
EAE is a bad analog, it is true. And the rodent nervous system is more robust than ours as well.
DeleteThis comment has been removed by the author.
ReplyDeleteKind of a Faustian bargain. Do you think your wife would approve it?
ReplyDeleteWell, I don't think I would take the drug until I deteriorated to the point of nearly being bedridden (a point which I no longer see as all that abstract). At such a point, I do think my wife would except the decision. In all honesty, I'd be inclined to take the sooner, perhaps even now, but I could foresee some pushback from my loved ones. If I had children, the decision would be much more difficult, but since I don't, it's my life, and after all, no one here gets out alive…
DeleteI have secondary progressive MS, and I live alone. I'd take the drug as soon as it appeared independent life was no longer safe or practical for me (a point I reached a year and a half or so ago, according to most observers). And even if stem-cell therapy works, as you say, it will likely be too late for me (as you know, Dr. Sadiq estimates ten years.) Of course, few physicians would dispense this drug, and you couldn't trust the ones who would. I don't really believe in physician-assisted suicide, at least for non-terminal patients; it's not consistent with the medical vocation.
ReplyDeleteI would give one year. I have two (or even more) lesions in my right pons that gave me severe trigeminal neuralgia. I had a rhizotomy 11 months ago and have been able to escape the pain for now. I am ambulatory and functiong very well right now and can pass all hands-on neuro exams. But I've been told the pain will come back when the nerve heals . . . I would give one year of full health and be happy to have a quick and painless death. My husband doesn't agree with me but I'm 53 and had a pretty good life until the pain started in 2010. The pain is unimaginable. Thanks for the provocative question. One year of travel, food, wine, adventure, followed by a painless death . . . yes, that would be a dream come true.
ReplyDeleteRecently found out I am going to be a Grandma for the first time, I would happily take 5 years and (hopefully) not complain. I am 56 and have had a wonderful fulfilling life. Right now however the future looks pretty grim. I am very grateful to have been spared the worst of what this disease has to offer thus far but can see the writing on the wall.
ReplyDeleteWorking with hospice patients for many years I do not fear death (honestly never have, strange I know), so I could probably negotiate my number down to one or two years if required.
Thank you for this provocative essay.