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JoshSon

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Hello to all,I am new to the forum, and please excuse my English but it is not my first language, so expect many mistakes. And I also apologize for the length of this message but I need to vent all this. Yes, I think ignorance is bliss, and I missed the old time when people used to go to a doctor for a health concern and then come back reassured and forget about the whole issue. Today with internet it’s different since anyone can be in the shoes of those early med students with access to infinite knowledge on health topics without the experience and wisdom to filter that information. I am starting to wonder if there is not two disease in there: BFS (benign fasciculation syndrome) where fasciculation can be clearly picked up by doctors and EMG, and GFS (Google fasciculation syndrome) where concerns rise primarily from internet research which brings an over awareness to every single thing in your body. Today my personal state of mind is very low, and I am pretty convinced I might have that damned ALS, especially that I am a 41 Y.O male, so in the risky age frame and gender.When I was 26 y.o I passed through a lot of health anxiety after experiencing strong dizziness and checking the symptoms on the Net and on some medical software that I bought back then. For 2 years I jumped from a doctor to another: neuro, Otorhinos, GP, orthopedist etc. everyone said Stress, depression and anxiety. After 2 years I started a therapy plus a lot of sports and relaxation techniques. All my symptoms vanished in 6 months and for the next ten years I did not experience any health anxiety.4 years ago I went through a very stressful period in my life: Dad diagnosed with prostate cancer then Alzheimer disease, very difficult time at work and in my private life, so the whole health issues came back. I first focused on tinnitus that drove me nuts for a year and thought I had a benign brain tumor (Acoustic Neuroma) because my tinnitus was located in one ear only, then I switched to heart palpitations concerns that were due to stress according to my doctors, then stomach problem, i feared a stomach cancer and did an endoscopy that came back normal, then lymphoma concerns because of a benign swollen lymph node, then early onset dementia because of my dad’s issue, then throat cancer cause I knew someone who had that, then rabies cuz I was scratched by my friend’s cat so I started searching rabies on internet LOL. During this period I also took a lot of weight 22 kg, jumping form 83 kg. to 107. However, I had one real health concern regarding a rare bone tumor in my right foot that was seen on CT-Scan and MRI. Biopsy showed that it was completely benign (it’s called an Osteoid Osteoma, worst chronic pain in my life), yet it was extremely painful for 2 years until they were able to remove it through radiofrequency ablation (first try didn’t work). Here also I freaked out about the long term consequences of Radiations due to CT Scans, and had my Google focus on that too… 2 months ago I noticed a hot spot of twitching on my right deltoid. It came after a workout and a sleepless night due to work and lasted a few hours the first day, a few minutes the second day and then disappeared and never came back. All this could have stopped here, but I did the mistake of my life, I googled muscled twitching knowing perfectly that I shouldn’t, due to past experiences with Cyberchondria. So I freaked out, and became obsessed with ALS, and in a matter of days twitches became widespread. A month later I saw a neuro (in my country it is easy to see a neuro immediately without waiting for months). Neuro did a quick and in my opinion not very thorough clinical exam. Made me walk on my heels, then toes, tested my strengths in my arms and legs and each finger, tested my eyes, then the reflex in my four limbs then said no ALS. He said he twitches too from time to time and mentioned BFS but did not say that I have it. The funny thing is that when I told him that I was experiencing twitching, he replied: “…and then you went looking for it on Internet and you saw ALS” :)I was starting to accept the benign diagnosis till 10 days ago when I had a second hot spot in my left thigh that lasted 15 hours, couldn’t sleep that night. Went back immediately to the neuro, but the twitching had stopped when I was at his clinic. He kept his opinion that I did not have ALS, but on my insistence he ordered blood tests, CPK, thyroid and many others and also an EMG. He told me that after that I should stop seeing doctors for this issue. Tests are scheduled in January.In the mean time I started testing myself like hell all the time, with no apparent weakness and I also started checking myself for atrophy. And guess what, I found clear atrophy in my left thigh (the one that was fasciculating) and right thumb (which had twitched also). An explanation for the left quadriceps atrophy might be that in February 2006 I had a torn anterior cruciate ligament (ACL) during and Aikido practice. Had surgery, but poor reeducation, and my muscled had shrink a lot. Even one year later I could not climb a stair on that leg and the muscle was clearly smaller than the other. Atrophy and extreme weakness (not able to rise my leg) came very quickly after the ACL reconstruction surgery (in less than a week), but then with serious physiotherapy with a new physiotherapist it went better and I was able to get back to full sport practice and run a half-marathon. An explanation for my right thumb atrophy could be that I broke that same thumb when I was a kid and it never healed properly. I still can’t bend that thumb correctly. But I am so focused on a doomed issue for my problems by now, that I am unable of a rational thinking. Sometimes I think that if I did not googled those symptoms, I wouldn’t have even visited the neuro and would have forgotten the whole issue after a couple of days instead of jumping into this downward spiral of anxiety.My questions are the following:1) What do you all think about my symptoms, early ALS or BFS?2) Can old injuries be the cause of body shape differences even years later?3) What do you think about the internet effect regarding the subject of muscle twitching?4) And the most important how do you overcome the fear of undertaking the first EMG. Fear of the results I mean not the procedure itself. I am paralyzed by fear of negative or abnormal results that might shows up on the EMG; especially that ALS has no cure so knowing earlier is of no real help. I feel that doing that EMG is like flipping a coin: head I’m clear, tail I’m doomed :). Some days I think about canceling the whole test. Any advice or help here, cuz I really want to do the test for peace of mind?Thanks a lot for reading all that, btw reading the threads on that forum have helped me a lot to put things into perspective, but still extremely worried. From now on and unlike Neo, if confronted with a choice I will definitely pick the blue pill, Cypher was right after all: Ignorance is Bliss :D)
 
Hi,nope EMG is not like a coin. It may also stay on the rim: you have traumas, local deneravion, etc,., so called dirty EMG BUT NOT ALS one. And that is most often position,as a person having experience of clinical weakness after trauma and surgery, you must clearly see the dofference. the fact your twitching had stopped in the neuro office is also VERY reassuring and stronlgy points toward stress relation.Yes old trauma may left a sign forever becasue if your muscle mobility was not restores completely, it would still be different in size, position etc. You are not surprised that the scars for example last forever, aren't you? I had my hand (palm bones) broken 10 years ago and I still have ring and pinky fingers prominently separated fronm the rest of fingers due to neural damage I suppose. I can easily make Vulcanite hello gesture with that hand :) but not with other.Actually in more serious mental disorders doctors can indetify a point known as crystallisation point, ,at which a single fact crystallises delirium, and a patient comes from diffuse bad mood or agitation to a delirious state, whet everything becomes clear for him - green little aliens from Aldewhatwever are the reason of his bad mood! They captured the whole world! Everybody must eat garlic in order to kill them! (just for example).We of course are not psychotic, but anxiety disorders also have their crystallisation point, and typical for health fears is a bit of information caught in the internet. After that everything becomes celar and each and every symptom is regarded as related to one or often several deadly diseases at once. As a person with strong rabies phobia (and as an owner of vaccinized home sitting dog and never vaccinized vagant cat) I perfectly understand you.As many of us you may understand that your main problem is long term stress but not neurological symptoms. So our cure is laying often in terms of stress decrease and anxiety treatment (however some fellows would tell you the saem about dietary issues, do not mind to dispute with them however, each has its own point of view).
 
Clean or at least not specifically pathological EMG, normal clinical exam, lack of neurological deficite 'de novo' (becasue you have a bit due to old trauma, this not to be accounted), and blood tests may exclude toher reasons for twitching like thyroid etc.Wish you a good New year then.
 
) What do you all think about my symptoms, early ALS or BFS?Classic BFS.2) Can old injuries be the cause of body shape differences even years later?Yes3) What do you think about the internet effect regarding the subject of muscle twitching?I see it happen all the time. The words "I googled muscle twitching, saw &LS, and then started twitching all over" has been the intro statement on these boards for a long time. I think it increases stress levels which in turn makes twitching increase and spread.4) And the most important how do you overcome the fear of undertaking the first EMG. Fear of the results I mean not the procedure itself. I am paralyzed by fear of negative or abnormal results that might shows up on the EMG; especially that ALS has no cure so knowing earlier is of no real help. I feel that doing that EMG is like flipping a coin: head I’m clear, tail I’m doomed :). Some days I think about canceling the whole test. Any advice or help here, cuz I really want to do the test for peace of mind?I had my EMG almost 2.5 years ago, and I was a wreck waiting for it. I had panic attacks, etc. I finally went to my GP, who called neuros around town to get me an earlier date (I originally had to wait 5 weeks). It's truly awful waiting for an EMG, unless you can somehow be realistic about it knowing that your EMG is going to be clean. You had a clean clinical exam, you are young (yes, I know everything is 40+ for risk factors, but most people with &LS are in their sixties), you are not weak, your doctor isn't in the least worried about you. Try your hardest to get your mind off of it. Or do something like meditate, or some alternative to reduce your anxiety.
 
I agree classic bfs She said everything perfectly What you have to realize with the internet is that it is numbers and links driven Meaning if you type in twitching it will return to you things like ms and a&% because those get the most hits and links Relaxation and reducing stress is the only thing that helps Thanks
 
Thanks a lot guys for your answers,If all this ends positively I’ll make a rule to myself to never diagnose online anymore, never ever. Any health concern and a true doctor’s advice should be sought exclusively. Regarding the twitching issues and while surfing old posts on this board, I was surprised about the number of doctors who seems to share the same anxiety pattern. Seems even professionals lose any rationality when things are related to themselves. On another note I noticed in my daily life that twitching was not so rare, 2 of my friends admitted sporadic random thigh, calves and arm twitching when I mentioned my symptoms. When I suffered from unilateral tinnitus a few years ago and started googeling symptoms, I thought that nothing worst could happen to me. A 24/7 loud jet-engine sound in my ear was for me the most cruel form of torture, although I knew the condition was not life threatening. I’ve spend months on tinnitus forums trying to find answers and relief. Today, and while the sound is still present and as loud as before, I barely notice it. 90% of the time I don’t even hear it, but I’m living the same cycle with twitching. Oddly, the only time when I had a serious condition, (the benign bone tumor in my foot mentioned in my first post), I did not panic or thought about something dangerous. I used to search the web for tendinitis, stress fracture and other sports injuries, and it’s when the doc said a tumor that I started panicking till the biopsy confirmed that it was benign (although from the beginning the doc has told me that It was probably benign based on MRI and CT-Scan.)I’ve been reading that around 6% of people who twitches, in the absence of clinical symptoms (and without and EMG test), have ALS, which means that 94% of people who only twitches without clinical symptoms are fine, and that’s reassuring. I also saw somewhere that the risks per year of being diagnosed with ALS in people in their early 40’s are around 1/200,000 and will climb to 1/10,000 around 65. I know numbers mean nothing, but as long as a diagnosis is not confirmed, statistics help putting things into perspective. This board is great; I wished a neuro was present here to help newbies lower their fears. Maybe also people from this site could interview a specialist in ALS who could explain why we shouldn’t go directly into panic mode when twitches without clinical weakness are present. I think there are not enough articles in the “featured articles” section of this site.I’ll let you know about the EMG results in January.Happy new year to all.Jason.
 
jason,therer is a sticky post here called "email from prof Carvahlo" and this in fact is the email interview taken by one of the fellows from one of the key European ALS specialists Professor Mamede Carvahlo from Portugal and a bit of answers form major Geramn ALS specialist Dr. Eissen. read it, I hope it would help :)have a good new year day!Hugsyulia
 
Thanks Yulia, yes I saw the emails from Professors Carvahlo and Eissen, and they are indeed reassuring. Anybody knows the prevalence of muscle twitching in the general population. I saw a survey from the Netherlands I think saying it was around 50% in men and 61% in women. If true that’s huge, and then how do we define normal twitching, 10, 20, 30… twitching per day?
 
I cannot believe how much you sound like me. Tinitus, ACL reconstructions, the random health fears... lolAll I can is you should not be stressing about atrophy. THERE IS NO WAY a neuro would miss atrophy in even a brief clinical.FYI I had a 'not thorough' clinical exam as well. Not thorough can be a good thing. It means with the basic things they saw (and the most important or they wouldnt have done them first) there was absolutely nothing to worry about.
 

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