Where is the study that "proves" DMT's are the only way?

[wanttogolf]

I know people with MS that are living into their 70's, I know many younger on DMT's that are struggling, with some dying in their 50's while on DMT's. Would love to see some real stats, not some double-blind small subset that gets sold as the ultimate truth.

[greaterexp]

Given the nature of MS, with its widely different experiences in symptoms and progression between people, I would think it unlikely that we could ever see such a study. I personally feel that DMTs are our best bet right now, but other treatments are being refined and improved, so I do have much hope for the future. Everyone must make their own decisions after careful consideration.

[wanttogolf in reply to greaterexp]

I agree, MS has very widely different experiences, I just struggle to understand why there is only one playbook. The combo of autologous stem cell and TVAM worked wonders for me, but unfortunately have only lasted three years. I can honestly say that I hope for future generations, but for mine I believe we will not reap the benefits of a solution. When I was diagnosed 16 years ago, we were "10 years away from the cure". No-one is saying that anymore. I am still hopeful that someone will make an out-of-the-box discovery down the road, but I don't expect it to happen in my lifetime.

[greaterexp in reply to wanttogolf]

There seem to be many playbooks, or different approaches, chosen by the folks here, but they all have varying levels of efficacy. Some prefer to stay away from DMTs, but others choose them to manage their MS. How can we really measure the efficacy of any approach, when MS is a disaster to predict?; hindsight doesn't make for a very good prescription!

I think understand what you're saying, however. There are re-myelinating agents that are being studied now, but they're still a long way off. I doubt that I'll see those used in my lifetime, but if they are shown to work, I sure hope those will work for the next generation. Wouldn't it be fabulous to find something that prevents MS altogether? Wow! I'd vote for that!

This site gives us helpful updates about research:

multiplesclerosisnewstoday....

[wanttogolf in reply to greaterexp]

Thanks for letting me rant. I think my attitude has been soured by neurologists that have never listened to me but spend our hour every visit staring at a picture of my brain and ignoring me... I am a person, not just a science experiment.

I truly hope the next generation or two sees an end to this beast. I think we all want this!

[greaterexp in reply to wanttogolf]

I’m sorry you’ve felt dismissed. It happens all too often. Any chance of finding a new neurologist who will listen to you?

[wanttogolf in reply to greaterexp]

I’ve been to three different ones, but I get the sense that if you don’t go on the DMT’s you are not heard. I understand that they are diligently working at a solution with the best intentions, but my case is complicated with a childhood concussion and history of lifelong dizzy spells since before the age of 5. Thanks for your support, I will keep hoping and praying for good health for all MS sufferers. God bless us all.

[greaterexp in reply to wanttogolf]

Amen!

[rjoneslaw]

I agree with greaterexp. No one person is the same so it will be difficult have a study to address everything in a study

[falalalala]

You and I both!

[RoyceNewton]

what would be your design for such a study. What do you want to achieve\find out. What do you think DMT actually does. WSU are aware of what can happen if you do not use it, so what are you trying to prove?

[wanttogolf in reply to RoyceNewton]

Like I said in my post before, there are some who live long and well without DMT, and some who have sadly been on DMT and are no longer with us. It would be good to know how the people that are doing well are doing it (exercise, diet, therapies besides the FDA approved pharmaceutical sponsored list)?

You can ignore me now, as @greaterexp put it, MS is a disaster to predict, and the amount of variables in the algorithm of the human brain makes the complications of the internet seem like child’s play. We will all have to tailor our choices to our personal experience, and pray.

[RoyceNewton in reply to wanttogolf]

agreed

[ahrogers]

I really wish there was some sort of test that could tell you what type of MS you have and/or how aggressive yours is.

Like you say some people have such an indolent type of MS that they go 20 years without a relapse while others relapse frequently with or without a DMT.

I am glad they are finding new DMTs though. I was relapsing every year before starting Ocrevus in 2016 and now it has slowed way down.

Not sure if I have rrms or ppms but either way Ocrevus is helping.

I hope you find something that helps!

[goatgal]

Like many of us, you want a definitive answer to questions about MS. Very likely, you will never find what you are seeking because MS is so variable in its effects and progression in each individual. Though research understands the mechanism of attack, science still has no single answer for the cause or the treatment, thus the multiple DMTs developed to address the progression. Add to this mix individual variability (my MS is not yours or hers or theirs or his) and you will arrive at an answer.

[MarkUpnorth]

I'm one who did decades of DMT's. After spending the last 5? with nearly full time flue-like symptoms, my neuro's had me stop. Along with the DMT's I was able to drop all the other drugs like a collapsing house of cards. Then I went "comatose". BUT, never stopped fighting. I stopped eating except for juicing fruits & veggies. Once I ate anything else, I went back comatose, till the next day when I was reset and able to juice. I did this for 2+ years. I eventually worked real, non-processed food, mostly fruits and veggies with small amounts of lean meat, fish....I am doing "great" compared to all those years trying to fight M.S. with the "best" drugs from the "best" doctors. Years later my neuro pointed out I had not had a relapse in a half decade. From "possibly the worst MRI's he had ever seen" when I added him to my list of neuro's, to relapse free. "And he explained others are eventually doing the same after years of the same continual deterioration by M.S., getting worse and worse on DMT's". Now, it's not all great, as I still have more symptoms on my neuro's visit intake form checklist than those I don't, BUT, take the small steps at getting better. I can after years, take 10,000 of them, walking 10,000 steps a day. Yes, I have to really work at that, and started doing so using my cane to push me down the sidewalk to get any, to being able to loose the cane altogether after having to use it more than a half decade later. I still have to really, really, really manage my energy. Don't ask me to stand on one leg for even a few seconds with my eyes closed, more less climb a ladder again. Something I did every day hands free carrying..... And after a few trips around the mall, to get those steps, yeah, I've burned through all the energy left in my body. And, don't ask this ex engineer and ex CEO of multiple companies to remember more than a minute??? Comprehend what? Forget simple math without a calculator and pen and paper. What happened there?

BUT, I learned to and love to cook! I can make 1 meal a day, most days. But, am sure I'd couldn't last a day flipping burgers on a grill at a snail's pace for long. Yeah, I could think about it all day long. Doing it....another thing.

So, DMT's or no DMT's.....I do better without them. But, all the years on them, and all the damage they did not stop from M.S., going off the DMT's does not make what you've accumulated go away. Yet,...I did lose the damage done to my vision from 7 bouts of optic neuritis over the years! I was told by every Opthalmolsist and I had several, that which was left afterwards was for life. Not so! Nutrition and exercise is my medicine. Not a cure, but I've stopped getting worse. And, small steps. Okay, very very small steps, getting better?

[wanttogolf in reply to MarkUpnorth]

Thanks for that insight, sorry you had to go through the battle to get to where you are now. What frustrates me is that my neuros all insist I’ve made the wrong choices, but when I ask for symptomatic relief, they don’t know why I would want that. They can’t correlate my lesions to the symptoms. I have many lesions, but they don’t bother me. What bothers me are my symptoms. If one could tell me “Here’s the lesion that’s causing dizziness, and here’s how we can tackle that one”, that would be great. Instead they say “Try injecting this into you, if it makes you sick don’t worry, we’ll try the next. Lather, rinse, repeat, until you’re comatose. And they have insisted that exercise and diet are nice if they make you feel positive, but they won’t change the course of the disease. I’m currently trusting Dr Terry Wahls and will see how that diet goes.

[MarkUpnorth in reply to wanttogolf]

I did too, trust the ideas of Dr. T W's. You don't have to to a T. I do dairy. I don't do processed foods.

Many of the drugs I dropped after DMT's were fighting drug side effects. No drugs, no side effects.

I had/have no health issues other than M.S. If you have high B.P. for ex., till you diet gets you under control...you have to keep up with that. My PSA which I tracked for years, as prostate cancer runs in the family, creeped way up. I got it way down using methods like no peanut, cashews, during pomegranite juice.... To levels decades ago, such that my doc said, great...we'll keep monitoring, hold off on the scalpel or radioactive seeds for now. Just bought more pomegranite juice. Every morning a juice glass I take. Better than the alternative.

Also want to golf...I used to golf. Then I started working a minimum of 80 hrs/week for many decades. Now I wonder why I loved hitting a ball around till I got it in a pee cup! I realized I probably loved being outdoors. Didn't matter what I was doing. If you love it, don't stop. I'll caddy!

[sashaming1]

Check nationalmssociety.org/. They may, or may not, have an answer for various studies on MS treatments and what has been shown to work, or not work (the results are never 100%). There may be other sites as well.

[Amore55]

Hey! I love your post. I left dmt “help” behind about 2 years ago. For me, I really believe it was the best decision ever. I have PPMS and none of them were the least effective, with some pretty wicked side effects. They believe if I had just one more dose of Tysabri after 6 years of it, I probably, just their speculation, would have developed PML. No more Kelly! I eat mostly fruits and veggies. Try to eat raw, but love my grilled veggies. I will eat meat, if I know the farm from which we purchased it and how it was fed.

Let us know how your decision making leans. By the way, I do not hold much faith with any neuros! Love, Kelly

[mrsmike9]

It's such an individual decision. I know I will always stay on a DMT because one year I went 2 weeks without my meds and I went down the tubes very quickly. But that's my story. All are different.

[Brindisi1]

I agree complex but if they took all MS drugs and put side by side, I dont think one would shine.

I think big pharma just needs customers not cures.plus it irritates me that 25 yr old drugs with genetic versions still outrageously expensive. Ck out prices .

I followed the website for HCST. There were parameters for acceptance. I was impressed with positive feedback. These people went off DMTs. Paid for itself in 2 yrs. Not perfect but appropriate for some cases. I think dr. Burt will share his protocol and will be available in our lifetime.

My other opinion, agree doctors didnt care what I reported. My dr just kept singing no active lesions for one point in time. Not taking into account took 4 months to get an appt when having double vision.

I went off dmt cause older. Hanging in there and hoping our voices will bring some fruit to this. Meantime impressivsd with courage of all.

[Johngm in reply to Brindisi1]

Good luck! Find a cure and there goes the gravy train. The drug I'm on $96,000 per year! Thanks to good insurance my co-pay is only $40.00, but someone is paying. And by the way I don't even have any after effects.

[Brindisi1]

I am glad your med is working, and yes I hope someone finds a treatment to stop MS in its tracks if not reverse some of it.

The gravey train has a pretty big lobby . While no doubt medicines are beneficial not only for this, but for other issues. I think people should make money, but it goes beyond excessive.

Copaxone cost 76000/yr and it is more than 20+ yrs old when I was taking it. It went up $600 a month, and that really perturbed me especially when I read poor mgmt, but promised stockholders dvds.

I went from mild demylinating to confluence of lesions(per my dr too numerous to count). Good deal is still walking. Only med I took.

From what I read HCST closest to cure. Same thing though, selection of good candidates depend on certain factors. Some turned down

The hcst by dr burt at northwestern may have a potential. Good thing no more meds. Some restores function, some residual issues. Nothing is perfect. Like chemo treatment, so not without side effects

But when over just recovery journey.

I guess MS or other drugs do not need to be advertise prime time TV, every website and magazine, can keep cost down. The physician should know and easy to find if searching.

I dont know. easy to grip. really complex.

Again, impressed with everyone's journey.