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by indymike 1335 days ago
My dad had MS. He passed away a while back. It's a horrible disease, and I'm in awe of people who live the best lives they can while dealing with it.

Because it is so horrible, and plays out over such a long time, there is an entire industry that preys on people with MS with false hopes, and miracle treatments (electric shock, photonics, bee stings, all kinds of potions and lotions). There's also a lot of research going on trying to get to the cause, find a cure, or slow the diseases progress. It's really hard to know the difference between genuine research, and snake oil.

My Dad was a doctor. An MD, with a BS in chemistry and an a second BS in Biology. He was a scientist first, and a family doctor second. Every time someone came up with a potential cure, he'd drill into it. Most of the time, he'd read all the papers and come back with "this one is a dead end." Occasionally, he'd find something exciting. One in particular was "bee sting therapy". It was about what you think: get stung regularly by bees, and something in the toxin slows/stops the process. Dad fell for it, and after a couple of treatments, he came to the conclusion, "it just hurts." And he stopped the therapy. He never gave up on science, and kept trying to something that worked (he was highly involved with both the MS Society and the MS Foundation).

MS is one of those diseases that really shows the limits of human progress. We know the "what", we have no idea on "how" and "why" (best guess as of now is Epstein-Barr virus, but that has been the best guess off and on for decades). This is despite billions and billions of dollars in research.

Don't give up hope, and don't lose touch with reality.

1 comments

Isn't there a large genetic component to the condition too? I thought it was predominately found in people of Northwestern European decent. I guess, it would be a perfect cocktail with EB virus + the right genes?
I have MS, PPMS (10-15%) no relapses and mildly progressing. Not a bad situation now, but no one knows the rate of progression.

My doctors tell me no genetic component and the Northwester EU is likely from lack of vitamin D. The closer you are to the poles the more likely you are to get it.

The "perfect cocktail" theory is the current thinking around EBV but, it was current thinking 20 years ago and fell out of favor. This is why dealing with MS has been so hard. We don't know what actually causes the condition.
Does Northwestern European descendants still have higher rates of MS? They have higher rates of my autoimmune disease fwiw.
MS is more common the further from the equator you are. That applies to Northwestern Europeans. This does not apply to descendants who move closer to the equator. In short, the link between ethnicity and MS is not well understood at all. The only genetic factor that seems to be well understood is that MS is more than 2x more common in women than men.