4 ms·

I'm not going to judge anyone (I have MS) but it's extraordinarily difficult to analyze evidence when the disease progression is random flares. If I have a flar

I'm not going to judge anyone (I have MS) but it's extraordinarily difficult to analyze evidence when the disease progression is random flares. If I have a flare, is it because a medication isn't working? Or is it working just fine and I would have had five otherwise? Not really any way to know. I would not take anything my doctor didn't say would at least not cause harm. But the calculus is different for other people. Among groups of people with MS I've chatted with there is kind of an unspoken rule to not advise treatment because we all know that we are all different in treatment, symptoms, probably cause... you can get off into the weeds pretty easily. Lipolic acid, vinpocetine, curcumin, lots of things are anti-inflammatory or good for neuropathy. I've had people recommend getting controlled bee stings, hensbane, obviously meditation for reducing stress and cortisol, and if we go in the direction of alternative methods (which I know people with MS who have used) you get acupuncture and yoga and herbal medicines. CBD in Europe is a treatment, I'm sure other cannabinoids would help different people in different ways too. I just have to tune it out, I want to spend my attention on what I'm good at and enjoy, and trust my [MS specialist] doctor to let me know about new treatments. Study says "inflammation decreased" which is great. But lots of things do that, so the question is how much... I wouldn't trust it without a fair bit of statistical evidence without my doctor telling me that whatever random supplement is safe enough to risk.

zamnos 4y ago
Do what's right for you, but never mind Europe, CBD is an accepted treatment in all US states. More specifically: there are no longer any states outright banning the use of CBD. This is not any sort of comment on MS and CBD, mind you. https://cfah.org/cbd-legal-states/ https://cfah.org/cbd-legal-states/ I'm glad you have a specialist doctor whom you trust. MS is a relatively known quantity, having being first described by a neurologist in 1868. Not all diseases and not sufferers have such a privilege. For something newer at the edge of medical sience, like AIDs was in the 1980s or like Long Covid is now, patients are finding doctors of only limited use, and the FDA an impediment rather than helpful. If there was a cure for MS available in Mexico, would you not start a Dallas Buyers Club for others afflicted?
- neltnerb 4y ago
  Honestly, I trust the FDA to mostly do a good job and would wait -- unless the time involved would mean that waiting would render the treatment moot. In that case it seems like there's more reason to try, at first, but there is a real cost. The cost of time spent focusing on enjoying what you have in the search for a better that may or may not come. And the cost of spending your days dissatisfied that it's not better than it is. I don't think chasing medical miracles is a good way to spend my days. If the treatment is safe and works I'm confused why you believe the FDA would prevent it's use, is that a common scenario?
  - zamnos 4y ago
    Dissatisfied is one thing. Wouldn't you rather not spend your days having flares at all though? A trip down to Mexico and, like, $50k for a stem cell treatment (HSCT) could be the cure for your ills. It's definitely not got FDA approval, and your mainstream doctor definitely going to advise you against it. And I'm some random Internet commenter so definitely don't remotely read this as treatment advice. But next time you have a flare up, tell me what you wouldn't do to never have them again.
    - neltnerb 4y ago
      I think a lot of this is the feeling that one's own case is special or that you will get a better than median outcome. I want treatment that, for median cases similar to mine, improves things with a high enough success rate and low enough side effect rate that it's not a difficult call anymore. And if the treatment is $50k in another country there's no reason that pharmaceutical companies in the US wouldn't pursue it as a treatment, so there's not the same argument as there is with supplements where they simply don't have funded studies. They'd want to upcharge it to $500k I'm sure, but I think the profit motive would be there for them to make it available. If there's a complex and expensive surgery that might fix a problem, I guarantee there is funding available to make sure it's actually safe and won't give me a brain infection or something. If it could be solved with supplements, the issue is that there's no one funding such research but my doctor also doesn't object to taking stuff that might work. Like curcumin and R-Lipolic acid, and have been actively told to take D3. No harm likely, probably not helping but why not? Neither of these cases seem like they involve the FDA, so I'm just super confused. The two people replying here seem to both be under the impression that the FDA drives the profit motives for pharmaceutical companies or stop people from taking random supplements so long as they aren't known to hurt you.* I honestly do not have a problem trusting that the FDA uses a basically reasonable process to evaluate these things, and that if the treatment was available in the US I have vastly less objection to doing it elsewhere where it costs less. But this is just me. I've lived through flare ups, and have had this since interferon was all we had to work with. I do not think it is a good idea to assume that you are somehow going to have a better outcome than median. Once my doctor agrees my prognosis is bad enough that the median outcome of a treatment is positive, my opinion changes. I'm a scientist, maybe other people can't think this way. I think it is a very bad idea to think you are different from average, particularly about things that are certainly out of your control. It's just... it's gambling with your health, double or nothing... but if my family and doctor think it's worth the bet it's a much simpler choice. I would not try to override my spouse or doctor or family if they felt it was too dangerous to be worth the potential benefit, I think they are much more objective than I am. * Let's ignore DEA nonsense, it's important but tangential.

zamnos 4y ago

Do what's right for you, but never mind Europe, CBD is an accepted treatment in all US states. More specifically: there are no longer any states outright banning the use of CBD. This is not any sort of comment on MS and CBD, mind you. https://cfah.org/cbd-legal-states/ https://cfah.org/cbd-legal-states/ I'm glad you have a specialist doctor whom you trust. MS is a relatively known quantity, having being first described by a neurologist in 1868. Not all diseases and not sufferers have such a privilege. For something newer at the edge of medical sience, like AIDs was in the 1980s or like Long Covid is now, patients are finding doctors of only limited use, and the FDA an impediment rather than helpful. If there was a cure for MS available in Mexico, would you not start a Dallas Buyers Club for others afflicted?

neltnerb 4y ago
Honestly, I trust the FDA to mostly do a good job and would wait -- unless the time involved would mean that waiting would render the treatment moot. In that case it seems like there's more reason to try, at first, but there is a real cost. The cost of time spent focusing on enjoying what you have in the search for a better that may or may not come. And the cost of spending your days dissatisfied that it's not better than it is. I don't think chasing medical miracles is a good way to spend my days. If the treatment is safe and works I'm confused why you believe the FDA would prevent it's use, is that a common scenario?
- zamnos 4y ago
  Dissatisfied is one thing. Wouldn't you rather not spend your days having flares at all though? A trip down to Mexico and, like, $50k for a stem cell treatment (HSCT) could be the cure for your ills. It's definitely not got FDA approval, and your mainstream doctor definitely going to advise you against it. And I'm some random Internet commenter so definitely don't remotely read this as treatment advice. But next time you have a flare up, tell me what you wouldn't do to never have them again.
  - neltnerb 4y ago
    I think a lot of this is the feeling that one's own case is special or that you will get a better than median outcome. I want treatment that, for median cases similar to mine, improves things with a high enough success rate and low enough side effect rate that it's not a difficult call anymore. And if the treatment is $50k in another country there's no reason that pharmaceutical companies in the US wouldn't pursue it as a treatment, so there's not the same argument as there is with supplements where they simply don't have funded studies. They'd want to upcharge it to $500k I'm sure, but I think the profit motive would be there for them to make it available. If there's a complex and expensive surgery that might fix a problem, I guarantee there is funding available to make sure it's actually safe and won't give me a brain infection or something. If it could be solved with supplements, the issue is that there's no one funding such research but my doctor also doesn't object to taking stuff that might work. Like curcumin and R-Lipolic acid, and have been actively told to take D3. No harm likely, probably not helping but why not? Neither of these cases seem like they involve the FDA, so I'm just super confused. The two people replying here seem to both be under the impression that the FDA drives the profit motives for pharmaceutical companies or stop people from taking random supplements so long as they aren't known to hurt you.* I honestly do not have a problem trusting that the FDA uses a basically reasonable process to evaluate these things, and that if the treatment was available in the US I have vastly less objection to doing it elsewhere where it costs less. But this is just me. I've lived through flare ups, and have had this since interferon was all we had to work with. I do not think it is a good idea to assume that you are somehow going to have a better outcome than median. Once my doctor agrees my prognosis is bad enough that the median outcome of a treatment is positive, my opinion changes. I'm a scientist, maybe other people can't think this way. I think it is a very bad idea to think you are different from average, particularly about things that are certainly out of your control. It's just... it's gambling with your health, double or nothing... but if my family and doctor think it's worth the bet it's a much simpler choice. I would not try to override my spouse or doctor or family if they felt it was too dangerous to be worth the potential benefit, I think they are much more objective than I am. * Let's ignore DEA nonsense, it's important but tangential.