Eight Months of Anxiety, BFS, ALS

I'm 8 month into this crap now. And it is at its worst at the moment. During the first couple of month my BFS stayed at the same level. It was okay. Although I couldn't forget those ALS thoughts, I lived quite normal, with some anxiety flare-ups lets say once a week. Then I went off for a beer with Chrissi and returned to normal.After 6 month I got a follow up EMG (I insisted-Neuro didn't think it was necessary) but now I wished I'd better never done it. It was a very thorough EMG. Chrissi was there too, for holding my hand The neuro tested both legs and both hands. In my right hand where I have my biggest issues and where my ulnar muscles seem to be less bulky, he saw some slight increased amplitudes. But he explainded this has nothing to do with ALS. Then he mentioned all the stuff from BFS in an nutshell and wished me I nice day. Reassurance lasted for two minutes. Then the doubts came back. Increased amplitudes? What does that mean? Maybe he missed sonething? Right now I know that those amplitudes mean renervation. And they perfectly match to my ulnaris-syndrom. But from I all know, there must have been a time with denervation in my ulnar nerv then. Denervation like fibs and waves? I think you can imagine what is going on in my mind since then. Chrissi explained me a thousant times that those findings have absolutely nothing to do with ALS. But anxiety makes the doubts so strong, it's so hard to believe.Well, then the "Tobes-Story" happenend and suddenly this ALS horror seems to be so near. We met him a few weeks before his nightmare, so for me this was not longer just an internet- disease but a real one. Thank god, Tobes is okay!Since my EMG I've developed some new symptom:1. Fascics are very less now. A few bumpers here and there. Hot spots in feet and calves. But I don't complain about them, cause I know there are people here twiching nonstop....2. still perceived weakness in right hand. Especially while using the computer mouse. Ulnar muscles are less bulky. Everyone can see it, it's not only imagination. But no clinical weakness. But what about those amplitudes? Is it possible that there was a time when I was clinically weak there and didn't recognize it? Is that why the muscles are less bulky?3. new symptom and very frightening: I'm loosing my voice while talking. This started a few days ago. I have to clear my voice very often. Mucus in my throat. Sometimes slightly slurred speech. Perceived difficulties with swallowing. Tongue and cheek biting. Whistleling makes my tongue tired. Sometimes I have some kind of jaw spasm. I have problems while breathing out. Seems as if my throat gets tight. All those symptoms raise my bulbar fears, which I never thought I would develope. Sometimes I feel like I cannot breathe out. For a second my throat closes. 4. 2-3 times a day I get some really bad sharp pains in my calf. Like someone is stabbing me. Just 1-2 seconds but very painful.5. I had a few days where my calfs feel knotted. I couldnt walk without pain. I thought this must be ALS cramping. But then the knots leaved and till now they haven't came back.6. dizzyness while walking. I had this for two days. Well there are a lot of other things, but you all know them.... *beep* EMG, *beep* amplitudes, *beep* ulnar muscles. I really don't know what to think of all this stuff.On the one hand my story seems so similar to yours. On the other hand there is renervation in my hand, muscles are less there, I get crampy calves and now really scary bulbar things.By the way, I did a breathing test at a cardio doc. He confirmed that my throat gets tight while breathing out. He thought it could be asthma bronchialis. Really?? Or could it be bulbar paralysis onset?Well that's my story so far. Still there, still obsessed. Still not sure. Still scared of what future will bring.And to those who didn't have an EMG: Only do it when your neuros say it is necessary. Otherwise you could feel worst than before if they find some changes. Believe me......

Hi Johnyy,from what you say I personally can see that your EMG most probably points to ulnar or carpal tunnel syndrome. I have a bit of it in both hands and in fact I too have some slight increased amplitude signals on my EMG - with verdict saying NO SIGNS OF MOTOR UNIT DAMAGE. look, denervation and renervation might be local only - and this is what happens at the tunnel syndorme. In ALS denervation (without renervation alas) happens in your brain and anterior horns, not locally at the place where your ulnar nerve innervated your distal arm and hand musckles.Then, why the hell you have to think that doctor can not distinguish spasms (which are astma and anxiety symptome, and we all know how much anxiety fellows suffer from throat spasms, esophagal spasms etc.) from a paralysis? Usually anxiety victims have some difficulties with breathing in (I personally have that since I can remember myself) but breathing out also could be impaired. if you have that spastic type reaction, then it is quite possible. Stabbing pains are incredibly common in our community (just search and you will find that at least every third fellow or so complains for that), it is a sensory issue not related to MND.I also have crampy calves (bad flareup this September, much better now, virtually nothing) and this comes and goes, and I am still walking please please try to keep on and think clearly that your symptomes are absolutely the same as most of us have.

Your neurologist said that his latest findings ("amplitudes" and all) are not indicative of ALS." Please........take that at face value!You're not a doctor, yet based merely on his use of the word "amplitude," you now think that he's missed something, and you're onto it???? C'mon!!! How ridiculous is that? Your doctor has reaffirmed that you don't have ALS. Throw yourself a party and stop the head-games that are ruining your life!As for your newly developed "bulbar" issues..... Bulbar onset ALS would not be preceded by eight months of fasciculations in your limbs and other places! Every symptom you describe with your voice, swallowing, tongue biting, etc., I've had myself. It's all anxiety induced, my friend. Relax, and these will dissipate.The pains in your calf are not indicative of ALS either. Pain in not a primary symptom of ALS. Muscle pain is a real symptom of BFS. Muscle cramping is also a symptom of BFS.Anxiety seems to be the worst part of this whole mess for all of us. Good luck!John

Jonny, sometimes when I read your posts I ask myself...who is this twin that I have, that my parents didn’t tell me about, who now lives on the other side of the globe?I have been twitching now for 16 months. I twitch constantly. I think that is the only difference between our stories. Also, replace your hand problem with my left bicep and we line up quite well. You know my history, you can read it. I too started off rather slow and then this progressed to insane levels. I have multiple reassurances that this is not ALS. I get that and actually pretty much buy that. I am focused now on the other forms of MND, not ALS. I am having no upper motor neuron signs at all at 16 months, therefore ALS is nearly improbable. It wasn’t until my tongue and throat got involved that my fears started to really take off, about 6 months in around late Feb, early March of this year.It put me into a tail spin. I had almost all sx you are talking about. My tongue did and still does on occasion feel like it has been licking a lollipop for two days, all sore and achy and fatigued. I really have to consciously work it to move the food around in my mouth, I have to consciously work it to start the swallowing process on those days. My voice goes horse all the time and I am CONSTANTLY clearing my throat. I have mucous that won't go down and sits there all day. Current, my latest bulbar sx is that I am spitting when I talk out the front of my mouth. I sometimes have to wipe it. I joked with my friends just yesterday how I am opening up my own company to sell tiny miniature windshield wipers for iphone so that I can keep the spit off my screen. I get food caught in the back of my throat still. Usually potato based stuff and eggs. That sucks when that happens. Anyway, I went to the top ALS/MND clinic in the US and they did an EMG on my tongue at 8 months. It was totally clean. Bulbar signs got worse. I bit my tongue so hard at the county fair one day that it bled like never before. I went running back to the clinic. I had a very thorough clinic in the bulbar region. The director of said clinic said that he too clears his voice constantly and even did so as he became horse during our conversation. He said that is related to allergies, maybe some I newly acquired, that is causing a mucus problem, thus the voice change and constant clearing along with frog in throat. The mucus drain also answer the food getting stuck. However the tongue tiredness and soreness is more related to TMJ related symptoms and anxiety related sx where you are flicking your tongue all night against your teeth unconsciously.And regarding your EMG experience. ..They found fibs on my EMG. And fascics, in my left bicep that was twitching uncontrollably for 8 weeks, along with a few fascics in the thenar. When I told him about the twitch, he looked at it with his eyes and said it was not impressive. These top experts know what the bad stuff looks like visually. I BEGGED for an EMG for the arm although he didn’t feel it was needed. I new what fibs were and what they sounded like and I starting crying like some kind of child when I heard them. He saw this and started to explain why this was not ALS related. Even later that day when I emailed him with more fear, he blatantly said in e-mail, "this isnt ALS now or ever."I have since turned down two EMG's that were offered to me. I am quite proud of that. If the doctor thought it was necessary, they would require I do it. I don't really want to go back to the doctor and I definitely don't want another EMG for the chance they find 'something' that I will have to process for weeks. I don't have a clue on earth what is happening to my body. Recently I am dealing with a hotspot in my right trapezius and that is a *beep* to ignore. It goes all f-uc-ki-ng day. Very annoying. My left leg is screwed up beyond description. My left foot hurts if I stand up too long. I suppose we can go ahead and call this BFS until the real cause is known, but I have a strange feeling that this will never be identified, as my neuro said as well, in which case I guess I will take the BFS dx and go with it for life it appears. I really feel that I am a "top 5%'er" in terms of my BFS severity, and I am not happy or proud of that, it is just a fact. Parlay that with too much research and medical knowledge and interviews with three of the top ALS experts, who were very blatant on their opinions of BFS/CFS, and this 'syndrome' is a tough one to swallow. One thing that they do universally all agree, on however, is that MND is usually very easy to detect, even subtle hints early on, and these folks are good at doing so. I vote that we both put our trust into our neuros and not into what our body is hinting. Easier said than done, I know. Hang in there Johnny. You are not alone. Odds are overwhelmingly in our favor. Keep your chin up. Keep talking to Chrissi. Keep venting on here when needed and stay in touch via PM if you need.

To GMayes20:Relax there, junior.Let me rephrase my statement about bulbar ALS:Eight month old limb twitches that are unaccompanied by weakness, that also produce a clean EMG would be unrelated to your recently developed speech, swallowing, tongue and breathing issues. That's a little more succinct. And, by the way, when I make such a statement, it is based on information that I've received either from my own neurologist, who is a specialist in motor neuron disease, or it comes from another reputable source such as a widely recognized, credible medical text. If you read this board, you'll see all kinds of folks making similar statements, with a similar measure of assumed authority in what they say. I'm just another BFS guy trying to give this poor, worried soul a little reassurance. What I told him is perfectly legitimate, in spite of the fact that, like most people here, I'm not a doctor. I don't take any of this personally, and you're certainly entitled to your opinion, but you might want to put a little more thought into your posts before you decide to jump on someone else. You're out of line here.John

okay 'senior'. As I already pre-apologized as I knew you proably would take offense, I will again apologize for my statement.For the most part I concur nearly completely with your above re-phrasment. Any counter agrument that I may have would be coming from my multiple discussions with both directors at argurably the top ALS/MND clinic in the country, and not worth our time to debate here. Your observation with the assumed authority is mutually noted. I also agree wholeheartedly. I just would like to see less of it. Again no offense meant, apologizing here. English was my worst subject, hence the engineering/biology degree. I wonder if Jonny32 apprecaites the hijacking of his thread? Jonny, you have to admit its more entertaining than twitching.

ghayes, I have to say though it is slightly concerning to me that a guy like you, who has done a lot of research into this, read lots of papers and talked to various experts STILL has a high level of anxiety - I tend to avoid the research part as those worrying rare cases only exacerbate my anxietyin any case my question to you is have you beaten the main fear that drives people to this board or is there a part of you that still worries about it and if so, what are you basing that worry on - would you not agree that the overwhelming likelihood is that you have nothing sinister and that we'll never get 100% certainty on anything in life?This is why I prefer to focus my energy on beating the anxiety that fuels the fear rather than looking at the thing we fear itself (that battle can't be won anyway)apologies for sidetracking here guys

Last thing I have to say about this:How you drew the conclusion that I took offense is beyond me. In fact, I clearly stated in my last post that I took nothing personally. Your apologies are unnecessary.As far as "debates" go.... you were obviously provoking one with your response to my first post. If you or anyone else has an issue with the accuracy of my statements, or my credibility in general, I would be most happy to entertain any constructive, intelligent criticism that you might have to offer. I don't pretend to know everything, and I'm always interested in learning. That's why I came to this board in the first place. There's nothing wrong and everything right with a civilized, mature dialogue whether we agree or disagree. You response, however, amounted to little more than a somewhat juvenile personal attack..... which I don't take personally. If there is an apology owed, it is to the person who started this topic. I'll offer mine, and go look for something better to do right now. )

The main fear that drives people to this board is ALS. And I would say for the most part yes I'm completely over that fear. The way that I am presenting is very very abnormal for any type of ALS case. However given my history as an athlete and former college football player with multiple head injuries, etc, my fear is often driven by other rarer forms of motor neuron disease, CTE and the like. My illogical thinking is that "ifI am presenting with something this rare, well I most likely have something mega rare." Which I can see is illogical. Personally I am presenting with pain, sensory and twitching with no upper motor neuron involvement at all, with some minor EMG findings. no strength loss, no weight loss. This is way off the path of ALS and falls more toward the path of BFS and most everyone here.For the record...my researching days are over. My searching for a cause is nearly over. Kinda letting TwitchBFS do that for me. (J/k Kevin)And yes dealing with the anxiety is very important as this can and will allow you to take your joy, trust me. Take care!

Feel free to continue hijacking my thread And thanx a lot for your support.I ask myself every day how long it will take for me to accept this to be benigne...The biggest problem for me and probably for Greg also, is the progression of our symptoms.It started slow and constantly got worse. So it is hard to think positive.Others, like Chrissi for example, had their biggest issues at the onset of their BFS. And then it improved.Improving cannot be ALS related. Progression can.So here were are. Waiting for what comes next.Again, thank you all for spending your time to give some peace to a fellow twicher! Nice one.

Thank you Yulisiar.When I had this knotted feeling in both calves, which came out of the blue, I thought: "Okay, now the ALS cramps start." I went for a 5 miles run and had no problems. After running the knots were there again.Then a few days later the knotted feeling suddenly disappered. But then the stabbing pains started.Two, three days very strong. Then it stopped. Then the bulbar isssues began.Each time a symptom disappears another symptom follows directly.At the moment there is not one day without any of those scary things. And I'm not talking of my atrophied looking ulnar muscles........Nothing I can do but waiting and seeing what comes next...And reading in this fantastic forum....Talking about my EMG. I really think it was a thorough one. It was very painful.And the neuro was experienced in doing EMGs.So there is probably no reason not to trust him.But, yes... You know.....

With MND/ALS non specific symptoms dont come and go FACT. You have real weakness and atrophy that gets progressively worse day by day. Johnny ive had 2 dirty emgs but still remain pretty strong...trust your neuro on this honest. My uncle had progressive bulbar palsy and it took his life in a little over 12 months most of his speach went in a matter of s few months , drooling was significant and profuse he had to hold a paper cup to catch it (he hadnt the strength to hold a normal pot cup. He could still walk in a fashion right up until his death as his legs were mostly sparred. When i look at all your concerns i would say your very similar to the bulk of people here. Ive had everything you mention dizziness /lightheadedness is constant every day , my calves constantly cramp and knot up too. I know it can be difficult but train your thoughts elsewhere find a hobby/ light sport and embrace it. It works for me.ATB

Johnny,I am at 8 months too. Here would be my update. I kept the format the same as yours to show the similarities. The locations of the hotspots, sharp pain, etc are different, but all in all very similar. After 5 months I got a follow up EMG (My Nuero - nueromuscular specialist with specialities in ALS and EMG, did it more to confirm a BFS diagnosis)He only tested my left leg and left arm. He says this is more than enough to rule anything bad out. He compared it to my first one I had and said the signals are even stronger, so it's better (is that increased amplitude??). He said I had a very mild case of BFS, mentioned all the stuff from BFS in an nutshell, and wished me I nice day. Reassurance lasted for a week or two. Then the doubts came back. Did he test enough muscles, did he take enough time, etc? Since my EMG:1. Fascics are less now. A few bumpers here and there. Hot spots in feet and thighs. But I don't complain about them, cause I know there are people here twiching nonstop....2. Still perceived stiffness in left hand. Feel like I have issues when I type. 3. I'm loose my voice while talking. I have to clear my voice very often. Mucus in my throat (constant post nasal drip). Sometimes slightly slurred speech. Perceived difficulties with swallowing. Tongue and cheek biting. Chewing makes my jaw tired. Sometimes I have some kind of jaw spasm. I have problems while breathing out. Seems as if my throat gets tight and spasms. 4. 2-3 times a day I get some really bad sharp pains in my knee. Like someone is stabbing me. Just 1-2 seconds but very painful.5. I had a few days where my calfs feel knotted. I couldnt walk without pain. But then the knots leaved and till now they haven't came back.6. balance issues while walking. Well there are a lot of other things, but you all know them.... *beep* EMGsWell that's my story so far. Still there, still obsessed. Still not sure. Still scared of what future will bring.And to those who didn't have an EMG: Only do it when your neuros say it is necessary. Otherwise you could feel worst than before if they find some changes. Believe me......