Hyperexcitability phase

[garym]

We know about a few MND cases and we have no idea whether these 4 000 memebers are fine

Docen, the key to those few cases were they were not dx'd with bfs from the start. True enough that we have no way of knowing for sure if some of our members went on to develop als, but we certainly have not had one single credible report of anyone on this site initially dx'd with bfs progressing to als. This includes the unfortunate case of Prattstar.

[J4son]

J4Ason: You are missing some key facts. Hyperexcitability ALWAYS occurs prior to neurodegeneration, it is a natural physiological event. In MND, this phase usually lasts (according to MND experts) weeks, rarely months. This is what is Joyce so obsessed about and I am happy she trust me and turn on me when she feels the need.
Again, the comprehensive paper about PNH posted somewhere in this thread would really help you to understand. There is nothing particulary scary, it is just neurophysiology.
But I cannot not comment on that fallacy that out of 5000 members 0 developed anything. We know about a few MND cases and we have no idea whether these 4 000 memebers are fine. We have no idea and hence you cannot say that. I remember a lady who came here with swallowing issues, tongue fasciculations and pathologic findings on swallowing study - clearly that was by no means BFS..

Docen,

I am not going to discuss medical scientific facts with you, since you’re the doctor here and I trust what you’re saying. Hyperexcitability ALWAYS occurring prior to neurodegeneration, ok if you say so, I guess you must be right.

Nevertheless, what I am talking about is a bit different, and comes from what we can witness every day and every moment by reading the archives of this site. It makes me think of the Fermi Paradox regarding the existence of Aliens. The Fermi's paradox is the apparent contradiction between high probability of the existence of Aliens in the universe and men’s total lacks of contact or evidence with/for such civilizations.

Here we have many papers mentioning a hyperexcitability phase prior to the onset of MND, we also have many people on this forum or elsewhere scared to death about being in the hyperexcitability phase, yet none of the people here who went to visit the best ALS clinic in the world were told about possibly being in a hyperexcitability phase prior to a possible MND, and none of the 5000 member diagnosed here with BFS came back to report developing ALS.

- For example, At the Mayo clinic no one told Matt that a diagnosis couldn’t be secured because he could be in a hyperexcitability phase. They told him immediately that it’s not ALS. And we are talking about one of the best ALS clinic in the world. Same for every single dude here who visited an ALS clinic whether in Europe or the U.S.
-
- If the hyperexcitability phase was something to worry about, then why none of the Mayo clinic patients that was diagnosed with BFS and included in the famous study, developed ALS?

- 5000 members where diagnosed with BFS here. Can’t we find 10% in a hyperexcitability phase prior to ALS? Not even 5%? Not even 1%? No one to report? Why?

Maybe because what you said is true, meaning that this phase lasts usually only weeks before other symptoms appear, but then again no need to worry….

[TwitchyDoc]

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.

[bobajojo]

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

[crotwich]

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...

[garym]

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.

I was told by the very first neuromuscular specialist i visited back in 2003, Dr. Shaibani (he originally dx'd bfs) @ Nerve and Muscle Center of Texas, that he saw BFS all the time also. He told me back then he had several cases a month. I think the reason why is he received referrals from Kelsey-Sebold clinics here in houston, which is a very large primary care provider for any suspect neurological conditions. I would argue based off all the information I've been able to gather over the years that bfs is actually pretty common, in terms of neuro-muscular disorders, but the majority of people dx'd just get on with there lives without any worry.

I personally know two different business associates that obviously have bfs, based on conversation with them, but they were both oblivious to the als supposed link and just didn't worry about it. I was telling one of those guys about my condition one time and he said, "man my calves do that all day" and he proceeded to raise his pants leg and show me.....I said, "doesn't that worry you a little?" and he said, "no, should it?" Of course I said no because I didn't want to freak him out like I was.

gary

[raindog]

Just want you all to know if ever i progress on to ALS you'll all be the first to know......I promise!!

[Little Lost]

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.

[crotwich]

I personally know two different business associates that obviously have bfs, based on conversation with them, but they were both oblivious to the als supposed link and just didn't worry about it. I was telling one of those guys about my condition one time and he said, "man my calves do that all day" and he proceeded to raise his pants leg and show me.....I said, "doesn't that worry you a little?" and he said, "no, should it?" Of course I said no because I didn't want to freak him out like I was.
gary

I shared a similar experience Gary. Few months ago I was talking to my boss and I mentioned him that I have a problem with fasciculations. To be honest, I expected that he won't have any idea what am I talking about. Quite to the contrary, he just laughed, rolled up his trouser legs and showed me his calfs. I was stunned; they looked worse than mine (and boy oh boy, mine look like they are taken from some horror movie). After I asked him how long does he have this and is he worried, he just replied "I am experiencing this for more than 5 years and why the hell should I be worried about???" I just smiled and said "No reason at all." So, I believe that BFS is not so uncommon, but many people who have it don't make a big fuss about it (like we do).

[Little Lost]

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.
Hx

[joycecaroll]

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.

[misterjuanperalta]

No weakness, no ALS, if no other problems found.

[joycecaroll]

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.

[Yuliasir]

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

[garym]

Just want you all to know if ever i progress on to ALS you'll all be the first to know......I promise!!

Just want you all to know if ever I progress on to ALS, it will have had nothing to do with my bfs......I promise!!