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Hopefully I've found solution to my fasciculations...

PostPosted: July 22nd, 2016, 6:51 am
by rutra80
So, after having my grandfather die on ALS and twitching myself for almost 5 years, I should already be either dead or insane. Through these years I visited a bunch of doctors but most of them are clueless here, so I had to research on my own and on the last screening among other things I tested the level of vitamin D3 in my blood. Deficiency is when you have 20-75 (can't remember the unit). I have 0,08... It means I don't have it at all. There's really not many things that can cause fasciculations, but deficiency of D3 vitamin is one of them, about which you can readily find out in most of the resources about it. I even found some scientific paper about a 84yo who had massive symptoms of lower motor neuron degeneration (fasciculations, cramps, atrophy, weakness) and very low levels of D3 - after supplementing it he recovered. It's also worth noting that Hawking's ALS stopped, and you can find him citing that it had something to do with the intake of vitamins.

Vitamin D3 is synthesized in human skin when it's in the sunlight. It is needed for calcium absorption (and other electrolytes to some extent) - calcium is one of the main elements which makes electricity work in our organisms. When you're out of D3, calcium function is impaired, hence the electricity glitches.

Now I'm not the most attractive person on earth so I cover most of my body with clothes, except the head and hands. Also, the way I live makes these few bare parts of my body meet sunlight not nearly often enough to produce any D3. It's like that for over 20 years now. And 5 years ago I tried an extreme diet which probably took away the rest of my D3 intake - that's when the fasciculations started.

There are supplements which normally give you 1000 units of D3 per pill - you take them once a day. I bought myself one that has 2000 UIs per pill plus some vitamin K (which is said to be needed for proper absorption of D3...). There's an upper limit saying that you can take up to 10000 UIs a day without overdosing, so last evening I swallowed 5 pills and some cheese (calcium!), and today ...I have no fasciculations :shock:

Could it be that simple? Or is it just a placebo? I'll keep supplementing and then do a blood test again, if it's still too low I guess I'll ask some doctor to do me a D3 injection (I guess I already should) and will let you know...

Re: Hopefully I've found solution to my fasciculations...

PostPosted: November 29th, 2016, 3:46 pm
by Link

I just came across this post and I have to ask, how are you doing now? Did your fascics come back?

Re: Hopefully I've found solution to my fasciculations...

PostPosted: November 30th, 2016, 3:01 pm
by rutra80
I can't say they're gone. But there's less of them (a couple of episodes a day at most, some days without them at all) and often they're barely noticeable.
My D3 level is at low norm now. I keep supplementing with 2000-4000 UIs a day, perhaps I should take more but first I want to re-do the blood tests.
Also a couple of months ago I switched to healthy diet - no sugars, no salt, no processed foods, 2000kcal a day mostly from proteins and vegetables, some fruits and fats. I lost almost 10kg already (I'm obese).
I switched most of the fats for coconut oil which seems to be the newest holy grail of neurodegeneration treatment.
I'm definitely better, besides the fasciculations, since a year I had very annoying cardiac dysrhythmias which now are almost gone. My pulse and hypertension got lower too - I put away the drugs.
On the bad side, I started to drink coffee and still don't sleep as much as I should.
People with high risk of ALS shouldn't slim. If I begin to lose muscles (so far I lost 1,5kg of non-fat tissue) or something else goes wrong, I'll switch to coconut oil based cetogenic diet which is said to do miracles in neurodegenerative diseases, and do myself some bomb supplementing. And of course will let you know if it makes me live ...unless it kills me 8)