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Author Topic: What I believe will be my last post concerning *** fear. *Possible trigger*.  (Read 716 times)

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Offline thenomnomnomicon

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I haven't read a great deal about BFS, so hopefully a few regulars here can enlighten me. Is there any correlation whatsoever between BFS and ALS. I have read a few conflicting studies. Those pointing toward a positive correlation seem dubious in their methodology. If someone could dispel these fears it would be hugely appreciated.

The studies I have read were the Mayoclinic study and the other was found on ALS Forums, but I cannot recall who conducted it -- or if whoever did had the credentials to be doing so.

Sorry if this triggers anyone, myself and another user would like to know.
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Offline thenomnomnomicon

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Still hoping for replies.
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Offline crazymommy

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I've had some bouts with ALS fear. And done some major research and had MAJOR twitching episodes, though no doctor ever diagnosed BFS or anything. Anyway, I've never come across and correlation between the two. Keep in mind - someone could create what seems like a reasonable link between wearing socks and pink eye if they do the study in just the "right" way.  On of many reasons NOT to google!
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Offline ShawnW

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There is no correlation...this comes from a long term study done and from experience of subspecialists in ***.  I read a *** specialist say that in 40 years of practice he has never seen BFS turn into ***.
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Offline mjd83

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Since you helped me last night, I'll try to bring some of my scientific training to bear to help you.

If there is one thing you never, ever want to do in science (and I assume medicine is no exception, although it is not my field), it is base knowledge off of one single study. Not all studies are created equal. Some contain more bias than others and it is pretty much impossible to design a 100% unbiased, completely objective experiment. Repeatability is a huge factor, as in can another scientist in another lab using similar techniques procure the same or similar results?

My understanding of BFS is that it's not a very hot area of study because (I'm learning) it's very common and normally completely benign. Funding is often focused on better causes (like figuring out how to better treat/cure ALS).

I'm completely with you man, I'm not totally over my ALS fears yet. I almost laughed when I read this title because I have found so many other seemingly more imminent ALS fears to worry about, that I hadn't even thought of this one yet :). This is the post of someone who has probably done a TON of online research on ALS, who has found ways to reassure the majority of their ALS fears, and who's ALS anxiety is making one final pushback by latching on to the BFS and worrying about it progressing!

I guess the one thing I would rationalize (and believe me, I know how far rationalization goes when you are in panic mode) is that BFS seems to be an extremely common condition with millions of people experiencing it, where as ALS remains rare (the 5,000 new cases every year in a nation of 300,000,000 as well as the 1-4 in 100,000 are one of the few things all sources seem to agree on).

With that said, if anxiety brings on BFS, and BFS were to bring on ALS, than one would expect to see a heck of a lot more diagnoses in a year! Just my thoughts.
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Offline thenomnomnomicon

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This is the post of someone who has probably done a TON of online research on ALS, who has found ways to reassure the majority of their ALS fears, and who's ALS anxiety is making one final pushback by latching on to the BFS and worrying about it progressing!


This exactly. I have very few concerns left this being among them (the other two being a slight difference in the way my toes bend, my big toe bends upward further on my left, and their disproportional strength and a feeling of being slightly imbalanced on the leg I believe is weaker; despite my neuro doing an EMG on the opposite leg when the twitching was at its worst).

I glanced at your other post. 'Tingling' sensations are extremely indicative of anxiety. With ALS you do not experience paresthesias (burning, tingling, itching). The ALS Forums might be about the most disreputable resource of information on ALS from what I'm gathering. There are a few good user-articles on ALS, but a lot of it seems to almost be deliberate fear-mongering or they're hugely misinformed. I think another problem is the type of individual those forums draw; if not someone who actually has ALS, hypochondriacs like ourselves.

Again, addressing your other post. Do you honestly think you, or I, or anyone here, of all people would miss or misinterpret 'subtle' variances. I test my toes individually, dude. My toes. You've admitted to hopping about on one foot.
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Offline mjd83

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No, I think that is the problem of guys like you and I. Our anxiety has us so hyper tuned into what our bodies are doing, that we are picking up everything little anomaly. As I have mentioned before, I didn't even notice the twitching until AFTER I was already in an ALS worry. Once I started "testing" my muscle strength, I started noticing twitching shortly after that in the left bicep and forearm, and eventually went to whole body but concentrates mainly in the left calf muscle.

My current worry now is the fact that I can actually trigger my calf fasciculations by tapping on them. Apparently, others in the BFS forum claim to be able to trigger theirs too, but it bothers me when the one I can seem to trigger happens to be on one of the suspected limbs (that also has the mild cramping).
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Offline thenomnomnomicon

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I also have cramping, again I'll reiterate my EMG was clean. My fasciculations were, evidently, never 'true' fasciculations (those caused by nerve impulse) as they never appeared on the EMG. When my 'attack' began the cramping was intensely bad, now they are very minimal as is the twitching. My twitching began in my legs and trunk and ascended very rapidly over two weeks terminating at my brow. Currently the twitches and cramps are mostly isolated to my right leg and I rarely experience sporadic twitches throughout my body. I am able to trigger mine depending on position, temperature, and blood-pressure (I know this because they are worse in the shower, I like sitting and texting friends in the shower and highly recommend it as a therapeutic practice; water creates enough body noise you don't usually notice the weird sensations and texting drives your attention -- use an airtight baggie over your phone). Often I'll be able to stop a continuous fasciculation by shifting my body. I can also induce cramping, though I do experience cramps without the need to induce them.

Still related, I have an internal tremor that is worse sometimes more than others (it feels like a bounding pulse). Even while typing this my right hand is cramping slightly. Do not be so concerned about cramps. They are a known and associated symptom of BFS.

I have a bad habit of editing my posts for comprehension. The message is the same.
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Offline thenomnomnomicon

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Nuuu. I can't edit anymore.
Sad.
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Offline ShawnW

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Cramping comes for a few reasons...especially in the very anxious.  First, the muscles are in a state of constant fight or flight...we use our hands and feet quite a bit through the course of the day.  Second, when we hyperventilate or have chronic hyperventilation problems the hypocarbia shifts calcium out of the blood causing a kind of microtetany...or contraction or cramping.  The we are not eating right, and not getting electrolytes which can further cause problems.  Oh yeah now we are self testing the hands and feet seeing if we can get them to cramp causing overuse syndromes...pain....soreness.  Cramping associate with *** is usually limb contorting...cant walk on your foot...cant open your hand...need to go to the ER for IV valium to open them back up again.  Big difference.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline thenomnomnomicon

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What causes Valium to open contorted limbs?

Curious.
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Offline thenomnomnomicon

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I think you just accidentally solved why I was having/have cramping, Shawn. Mine was consistent with hyperventilation when it was really bad.
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Offline ShawnW

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A couple more notes...BFS progression.  I have yet to find one neurologist say they have seen BFS progress to ***.  Not one.  There are some very rare case studies of people who twitched shortly before disease progression.  But, keep in mind these cases are few, and you are talking about a super rare presentation of a rare disease.  What are we talking about here like 1 in 1,000,000?  I have heard of BFS progressing to something called neuromyotonia...which is a more severe form of peripheral nerve hyperexcitability.  But, this is also extremely rare...and it's not ***.  Most people live long happy lives with that disorder.

Also, if I were to do curls with dumbells I can guarantee I can lift more with my right arm.  Is that weakness of the left?  The body has natural asymmetries in strength, motion, size of limbs, dimples, dents etc.  It's just now we are drawing attention to them and attaching meaning...of course bad meaning because that is what good HA'rs do.  Guys you can't trust your skewed observations.  A neurologist knows what to look for...you don't.  You have zero idea of what is significant and what isn't significant.  Why would you trust your anxiety filled observations over a trained neurologist who spent 12 years in training?
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline ShawnW

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What causes Valium to open contorted limbs?

Curious.

It's a muscle relaxant and serves to "reset" the nervous system.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline ShawnW

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I think you just accidentally solved why I was having/have cramping, Shawn. Mine was consistent with hyperventilation when it was really bad.

I think that's where most of our cramping comes from...this chronic state of hyperventilation.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

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