BFS in a nutshell

Information about how to manage or reduce the severity of BFS symptoms

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Re: BFS in a nutshell

Postby GotTheTwitchies on December 11th, 2014, 3:20 pm

This is a fantastic post, and one I wish I'd read before doing what everyone else seems to do: reading up on ALS and getting stressed. The description here fits me exactly and finding this site (some months ago) was a real comfort. That and going to one of the most noted neurologists in the country and having him say, "I don't know what you have, but it's not ALS." :)

I did have Parvovirus (Fifth Disease) as an adult, but I distinctly remember eyebrow twitches before. So, it was not a cause, although it may have aggravated things.

I have tried magnesium on and off... I am trying to determine if the effect is real of placebo. I am undecided.

One thing that did help my general health and may have helped my BFS:
While trying to diagnose what turned out to be Fifth Disease, my doctors tested my iron levels. This led to the chance discovery that my ferritin was high. Originally this was thought to be linked to my acute condition, but a year later, the levels were still elevated. It turns out that people have no way to excrete iron, so it builds up in your system. If you're male (I am)... it happens faster. If you have haemochromotosis (took the test - I don't), it happens much faster because you don't have a specific gene. And if you take a multivitamin (I did), it happens faster. So, I had to treat it:
1) I cut way down on red meat (bummer),
2) I switched from the normal multivitamin (100% RDA Iron) to the "silver" version (zero iron), and
3) I donate blood.
Yes, #3 is the only effective way to remove iron from your system. ("Fetch ye leeches!") The effect on my BFS and a host of other symptoms was marked. Yes, some of it may be placebo, and some may be just timing of things that were going to go away anyway, but I'll take the gains I've gotten... and I did some good along the way by donating blood.

The moral of the story is this: next time your doctor needs to draw blood for some reason, ask her/him to check off the "ferritin" test also. You might be surprised.
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Re: BFS in a nutshell

Postby Yuliasir on December 12th, 2014, 12:41 am

hmmm by the way... I also have high iron level (and a hemoglobimn was always a bit higher than it is normal for a female, except the time when I was pregnant). So well maybe it is one of the reasons :))))
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Re: BFS in a nutshell




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