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another email from my neurologist friend

PostPosted: September 11th, 2003, 2:14 am
by Brian_B
You're probably right. Most people are just too
unaware of everything around them that they are not
going to notice twitches. Those are the people who
come in because they can't hold a pen in their hands
or go up three steps. Then it finally it sinks in that
something must be wrong.

I find the viral theory of BFS interesting. I wonder
if ALS begins with a similar viral trigger. But only
certain cases go on to ALS because of a genetic
defect, or those who get BFS maybe have a better
immune system that arrests the process befor it kills

Twiches are likely due to partial electrical
depolarisation of the motor neurons. That may occur in
a damaged neuron, an infected one in the past (like
Post-Poliomyelitis Muscular Atrophy Syndrome) will
have fasciculations.) But in the rare unlucky ones the
damaged cells go on to die off for reasons that we
don't know yet. That viral trigger may be the clue we
need. Viral triggers trigger MS, Lupus, and Rheumatoid
Arthritis (all autoimmune diseases.)

ALS patients have neurons that have an internal defect
that allows the infection to kill them but not healthy
neurons in everyone else. BFS is a neuromuscular
disease, fortunately a benign one but it may be the
clue as to what causes other types of motor neuron
disease. Werdnig Hoffman is a form of ALS that occurs
in babies (terrible disease and fatal). Next we need
to find a genetic marker. Maybe I can talk them into
granting me to carry out some research on BFS and ALS

(Don't let any of this scare you. It doesn't scare me
personally. You and I are definitely BFS. But we may
hold a vital clue about motor neuron survival.)


PostPosted: September 11th, 2003, 2:22 am
by Pole
So, as I understand your friend, who is a neurologist, thinks that BFS is a benign or not fully developed form of ALS? An Interesting but controversial theory



PostPosted: September 11th, 2003, 6:35 am
This sounds very interesting, and plausable.


PostPosted: September 11th, 2003, 7:15 am
by John
Thanks for the info ,it's iteresting and it does'nt scare me .


PostPosted: September 11th, 2003, 7:39 am
by jcavan4125
You're friend is a neurologist and I'm not trying to dispute what he says, but BFS is peripheral nerve hyperexcitability and from what I've read has more to do with potassium channels in the peripheral nerves, not the anterior horn cells of the spinal cord (as is the case with ALS). I do agree that a viral infection is probably the trigger (or at least a trigger) and that genetic predisposition plays a role (probably a large role) in ALS. What happens after the triggering event (in BFS) is anyones guess but most think that there is an autoimmune component with antibody formation against the potassium channels.


PostPosted: September 11th, 2003, 11:43 am
by fastpage
I was doing some research and I found an interesting bit of information I had never seen. Studies have been done (and are ongoing) showing that the incidence of ALS in the military population of Gulf War veterans is over twice that of the regular military population. Don't get nervous if you are a gulf vet-it is still a very small number but it raises the question of whether environmental factors are at work here and if the same could be true of other neurological conditions such as BFS. I will continue to follow these investigations as they may be helpful to our situation.


PostPosted: September 12th, 2003, 1:29 am
by Brian_B

Im pretty sure that he doesnt say he thinks for sure it is benign form of ALS, but rather he thinks it is one possiblity


PostPosted: September 12th, 2003, 1:40 am
by Brian_B

I think he means that what he said was a possiblity but didnt mean that it was for sure the real cause and what it is

basically we dont know for sure what causes BFS but theres several theories