What Is ALS's 'Mystery Phase'?

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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: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
 
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...
 
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. HxPS 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.
 
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
 
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.
 
LittleLost -- I love it! You always say things so well...I didn't go looking for bfs. It found me. I know this is not a matter of noticing it more, though as you say there may be an element of that. Just had to tell you again. and the rocking chairs and long tailed cats I can just see it. Love it!! Love your humor!
 
I'm sorry for spamming, but this is really causing major panic. I've been crying this whole night. Please help.Yesterday I was self testing. I stuck out my tongue and then used my finger to press the sides of my tongue. I tried really hard to push my tongue to the left against the resistence, and then to the right.The left side was weaker then the right. Not percieved weakness - it was really weaker. Could this be normal? Does anyone notice the same thing?
 
Joyce, as far as I know, normally doctors do not test the tongue in this way. So I believe you were far too over any normal practice. That is what I think about idea to test the tongue in a way like doctors test a hand push strength... Then, regarding the fact that you can not push the finger to the left in the same way as to the right - fascial muslces and all related muscle system, including tongue, has the same asymmetry as the hand and leg muscles, so no wonder you cannot PUSH your tonge to the left in a same way as to the right.the only tests you can do with your tongue is whether you can exert it out long enough, if you can keep it stick out deliberately and if you can move it from side to side (not pushing anything) in a swift and smooth way. If you can do it, it is enough.I hope I would never read here something like "I dedcide to lift a brick with my tongue and I failed. I am sure this is a real weakness" :)
 
Thank you Yulia.There's a difference in ability to reach my teeth to. On the left side I can't reach all the way back with my tongue, but on the right side I can.
 
Joyce,I do not know how else to explain...Well, you chew mostly on one side. Those side muscles are stronger of course. This is the same muscular and motor asymmetry as you have over the whole body. Each and every ortodentis can tell you that. That is why we have occlusion problems by the way.The problem with tongue due to its innervation will manifest not in the fact that you can not reach teeth on one side so far as on another. Poorly innervated tongue would betray you in much more simple and easy actions, like just move from side to side. Not HOW FAR, but just to move right and left.Those kinds of self-testing really resemble me one of our fellow ladies who shared her bad experience with moving a heavy flower barrel with two fingers in order to test hand strength. She was very close to a serious wrist injury.Neuros, when the do clinical test. NEVER ask you to count your side teeth with the tongue. They do not need that. they ask you to stick it out and see, if it is straight or deviated. Then may as to lift it up. They may ask to move it slightly from left to right, or roll it up and down (to make a 'pipe'). Tht is ALL tests you need to be sure you are healthy.Joyce, I do not know if it will help to easy your mind, but I re-started my vocal lessons few weeks ago. this time I practive with a teacher in person and one of our excercises involves pushing a cheek with the tongue.How do you think? me and my teacher do have this difference in how far we can pudh the tongue on the left and on the right?YES WE DO!And my teacher told me: "try to push more on the other side, practice and you would reach the same degree on both sides"I do not want you to practice. I just would like you to know it is normal motoric difference due to asymmetry of face and body, and could not be used as a neurologcial test. No way.
 
Do not know. Ask your doctor :) some people normally could have a bit of deviation, more to the end, but please ask the doctor in case of doubts. They had seen tons of tongues and know for sure which deviation is due to denervation and which is just a physiological one.I personally could expect some deviation at your tongue becasue of excessive and unusual testing (I do not joke, it could be strained as any other muscle).
 
My OCD is going crazy! For three days now I've just been in my bed shaking. I have to go to school now and I don't know how to get through it.Someone said to me that in bulbar, when you swallow the water will go through your nose. Now I'm scared to swallow! And evertime I do, I feel like a lttle bit of water comes through my nose. Would it be more obvious in bulbar?
 
Joyce,is there anybody in your closest circle to whom you could speak with full confidence about your current condition? It is really alarming but of course not becasue of ALS. School counselor? Priest? Your persoanl doctor dealing with OCD&? Anybody who is trained to listen cafeully I mean. You need to speak and cry, speak and cry, that is all.Nope, what you feel is a common illusion (I had it too). In the bulbar palsy water goes out of the nose if soft palate is paralysed and could not be a natural gatewat between mouth and nose. Harly one could miss this state, believe me. Bulbar palsy usually is quite violent so if you feel 'a bit' - it is not the case.
 
I am quite sure about that. Joyce, if you are taking antidepressants, the most dangerous would be an idea of quit taking them because you afraid of swalloving. They are not designed for abrupt quitting and probably that is why you feel so bad. So I would advice to take your prescribed meds (as long as you are nor drooling as a baby, your swallowing is fine, believe me).
 

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