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AboutBFS.com • View topic - Hyperexcitability phase

Hyperexcitability phase

BFS Online Support Group

Moderators: JohnV, Arron, garym

Re: Hyperexcitability phase

Postby garym on January 15th, 2015, 10:02 pm

Last edited by garym on January 16th, 2015, 1:21 am, edited 1 time in total.
Reason: addressed Prattstar after being asked about him
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Re: Hyperexcitability phase

Postby J4son on January 16th, 2015, 9:02 am

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Re: Hyperexcitability phase

Postby TwitchyDoc on January 16th, 2015, 9:32 am

J4son, basically you are right. Just to be sure, I do not talk about hyperexcitability in the sense of having twitches for months but in the neurophysiological one, where it simply means decreased threshold for the stimulating agent that accompanies denervation. There is nothing scary about that.

However, as Garym mentioned, we cannot say that out of 4000 members nobody developed ALS - can you imagine being diagnosed with such a devastating disease...would you even think about some BFS forum? They would surely not come back and report.
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Re: Hyperexcitability phase

Postby bobajojo on January 16th, 2015, 11:07 am

I just read Greg's post about his visit to the Mayo Clinic yesterday. Fantastic post, better than my post from 2012 when I visited the Jacksonville office. Here it is:

viewtopic.php?f=4&t=21373

When I posted back in 2012, I wrote that the Mayo Clinic told me "they see this (BFS) all the time." Docen has since challenged that statement saying that I must have misunderstood and maybe they see people who have a few twitches a day all the time but not people like us. Well Docen, read Greg's post. They told him the same thing they told me.

Many of Docen's statements are based on large assumptions. Like believing that if someone previously diagnosed with BFS were to have ALS they would not report back. I disagree. If someone were diagnosed with BFS on this board and then later developed true weakness, we'd see those posts leading up to a diagnosis and someone on this board would receive word that their diagnosis has changed. But that just doesn't happen on here. So listen to your doctors. If you have not had the privilege to see a top neuro like the Mayo Clinic, just read what they told me in 2012 and what they told Greg yesterday. Its the same thing neuros are telling the rest of us all over the world.

-Matt
Over 10 billion twitches since May 2011.
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Re: Hyperexcitability phase

Postby crotwich on January 16th, 2015, 11:15 am

Docen, if somebody with the initial diagnosis of BFS indeed developed ALS, I am sure that someone on this forum would report this case, because many people here read ALS forums as well (including me, which is very stupid btw). Just to add that a few weeks ago I had a visit with my neuro, who has more than 40 years of clinical experience, was a member of ALS association board, and diagnosed many (certainly much more than 100) patients with ALS. Once again she confirmed me that she had ONLY ONE patient who initially presented only with fasciculations but finally received a diagnosis of ALS. Hoverer, this unfortunate person developed obvious clinical weakness within SEVERAL WEEKS of onset of fasciculations. Maybe this person was in this hyperexcitability phase. Also, her experience is clearly inconsistent with this infamous 6.7% (or 14%) research...
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Re: Hyperexcitability phase

Postby garym on January 16th, 2015, 2:51 pm

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Re: Hyperexcitability phase

Postby raindog on January 16th, 2015, 5:11 pm

Just want you all to know if ever i progress on to ALS you'll all be the first to know......I promise!! :lol: :lol: :mrgreen:
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Re: Hyperexcitability phase

Postby Little Lost on January 16th, 2015, 8:48 pm

Oh no is this descending yet again into the " what came first the chicken or the egg.......(the fasciculation or the weakness) debate. That subject leaves us like long tailed cats in a room full of rocking chairs, and I think the last one finished just a few weeks ago.

Hx

PS Just as an aside I think the egg came first because dinosaurs laid eggs, and dinosaurs came before chicken. Though admittedly some people think dinosaurs were actually just giant feathered birds maybe even chicken like......ooophs waffling on now.........however it does pose a new question of what came first the dinosaur or the egg.... I will shut up now , was just trying to change the subject to save our poor tails.
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Re: Hyperexcitability phase

Postby crotwich on January 16th, 2015, 9:08 pm

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Re: Hyperexcitability phase

Postby Little Lost on January 16th, 2015, 10:43 pm

I know other people twitch, but I think the difference is that many of us on here twitch extensively and excessively. People can see my twitches if I wear tight jeans, my soft palate twitching has been filmed for research 3 years ago, as has the eardrum fasciculations that leave me half deaf for days sometimes. My children feel the thumps when they are sitting next to me. Sometimes it is so bad it scares them, the younger ones thinking I have some monster in my shoulder, leg, stomach etc. It never stops. They even sent me for an advanced neurological sleep study ( awful you have a cap, wires on all limbs and as a final insult film you. They recorded the odd fasciculation in calf at all stages of sleep, even in REM when you suppose to be paralysed. ( mind you this was with surface not needle, so they concluded they may not have been true FP, can't stick needles in a sleeping person).

I don't think BFS can be fully defined as simply an increased awareness, or overreaction to the regular background physiological level of fasciculations that many people experience. An element of that exists crotwitch you are right. But Honestly..... I didn't go looking for BFS, it found me.

For those with true BFS I think there is a immunological component. Many neurotransmitters are also important cytokines with roles in the peripheral immune responses. For example I recently worked with acetylcholine a well known neurological molecule, and it turns out to be a potent immunoregulatory molecule. There is much cross talk between the nervous system and the immunesystem. ( exploding field of neuroimmunology). For this crosstalk to happen the systems have to have a common language, and this is achieved by utilising the same types of molecules. The danger of two systems sharing, is that things going haywire on one side can have consequences to the other.

Each to his own thoughs though, and it is healthy we all have different opinions and theories on it. We all have to find our own level of comfort.
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Re: Hyperexcitability phase

Postby joycecaroll on January 18th, 2015, 12:59 pm

So, in conclusion: if ALS would ever present with fasciculations, there would be other signs visible at the clinical? That's all I needed to know.
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Re: Hyperexcitability phase

Postby misterjuanperalta on January 18th, 2015, 7:52 pm

No weakness, no ALS, if no other problems found.
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Re: Hyperexcitability phase

Postby joycecaroll on January 19th, 2015, 11:27 am

I'm so scared to ask this, because I'm scared of what the answer will be. So please be nice.

For about a week now my jaws hurt a bit whean I chew. They burn with lactic acid. Is this related to *** in any way? I keep reading *** don't manifest with sensory symptoms.
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Re: Hyperexcitability phase

Postby Yuliasir on January 19th, 2015, 12:02 pm

nope this is not related to ALS. This is becasue you clench your jaws due to the fear and overall tension.
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Re: Hyperexcitability phase

Postby garym on January 19th, 2015, 5:21 pm

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Re: Hyperexcitability phase

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