Today is the 1.5 years since my first twitch. I wish I could say I am doing better, but I am not. I have more twitching than ever, I have numbness and crawling between my shoulder blades at back etc. I have some new symptoms like I stretch my hand for 10 seconds and then it twitches back on me like on 3 different places and then stops... Aghhh...I have a cough for 4 months now. When I am good I only cough clear mucus, when I am bad like this days my mucus is yellow and I cough every 10 seconds and it is killing me. There seems to be something wrong with my lungs, I am going to X-Ray today and to spirometry next week. GP listened to my lungs and found nothing wrong and he did oximetry test and my oxygen level ws 98%.Now I am afraid I may have lung cancer (yes I know,m 44 years old non smoker) that is pressing my nerves in the back and causing crawling tingling there. You can not just cough so long without a reason. I cn not have flu's for 4 months.So to make it short, I still believe I may die soon, I just don't think what will kill me, the neuro stuff, the lungs or I may have a stroke tommorow.Anyway, it is my anniversary (half in fact), I feel barely alive with this twitching and cough, but I guess I should celebrate non the less. It seems it can always be worse than one thinks it can.Take careYoursJerry
1.5 Years of Twitching - Getting Worse
- Thread starter jerryTwo
- Start date
Hi Jerry,Fisrt I want to wish you a really nice 1.5 year birthday, and I wish you all the best, especially a good health.I understand your fears, I share some of them sometimes, because as a good health anxious I fear cancer from time to time, when the ALS fear goes away 
)Indeed a cough persisting for so long must be investigated, but please, keep in mind that there is other possible cause. For example, I am a GERD sufferer for years, and I can say that it's really a huge cause for cough and throat related issues. I am not a doctor, but if you had lung cancer for 1.5 years, then probably it would be quite visible. Maybe your GP would have find something wrong while checking your lungs ?Also, I remember that you sayed previously you have already went through a colon cancer fear. You had the ALS fear, and now a lung cancer fear. While your symptoms disserved to be taken seriously and investigated, you also must keep your previous experience in mind. I am like you, I am going from one disease to another and for now, I am still here, quite healthy in fact... Please keep us informed of your X-Ray result, crossing fingers for you.Take care,Christophe
)Indeed a cough persisting for so long must be investigated, but please, keep in mind that there is other possible cause. For example, I am a GERD sufferer for years, and I can say that it's really a huge cause for cough and throat related issues. I am not a doctor, but if you had lung cancer for 1.5 years, then probably it would be quite visible. Maybe your GP would have find something wrong while checking your lungs ?Also, I remember that you sayed previously you have already went through a colon cancer fear. You had the ALS fear, and now a lung cancer fear. While your symptoms disserved to be taken seriously and investigated, you also must keep your previous experience in mind. I am like you, I am going from one disease to another and for now, I am still here, quite healthy in fact... Please keep us informed of your X-Ray result, crossing fingers for you.Take care,ChristopheThanx. You are correct, I went through prostate cancer, stomach cancer and colon cancer fears in my life. I am not yet done with ALS fear and I have lung cancer fear. And as the other fears, I am not saying it is impossible, but at age 44 only 1.3% of lung cancers appear. And as a non smoaker and not working in any risk cause environment... it is the fear, not the fact that I fear lung cancer. The GP thought of asthma (but I never had it), GERD or reccuring infections and allergies as the top 3 causes. She dismissed the COPD as a possibility and she told me nobody can say one does not have cancer. Aghhh... I will let you know in a few hours how C-ray went. I hope it is one of the stupid fears again. It would not happen if I had not have cought for 4 months, truly this week is the worst and no cancer goes so quickly, seems like to be infection again (but I am looking for underlying cause of reccurent infections) and it my back has not tingled and I have a numb spot. EVen google doesn't see any links connecting tingling in back and lung cancer though (pain radiating from shoulder to arm yes, but I don't have this one).So yes, the GP told me why I think about cancer, it is one of the most unlikely causes of my coughing. Because on the other hand, my wife is having cold like symptoms for 2 months which is more she ever did. She doesn't cough much, but my 8 year old son coughs a lot and he got a fever from today so...But I don't have cough for 1.5 years but 4 months.Anyway, after 1.5 years and so much nerve problems I should now probobly dismiss the ALS once and for all. Whaterer is causing this is not this disease it seems others that told me so were right (luckily for me).
Hello Jerry,I hope your x-rays come back clean. By the way, I have the same tingling problem in my upper back area, left side, just under the shoulder blade. It started a couple of months before the twitching and never went away since then. Sometimes I don't feel anything for several days, and then it comes back, full force. Also, when I go to the infrared sauna it gets worst. I had x-rays a month or two (can't remember) after it started, three years ago, and they came back clean. Docs don't seem to know what could be causing this. I don't have a persistent cough, but I produce more mucus than before and when I cough the sound is also more "cavernous" than before... so I don't know. 
Anyway, good luck and keep us posted!J.
Anyway, good luck and keep us posted!J.christinasgirl123
Well-known member
Happy anniversary Jerry. Do not worry about your cough too much. This winter there's a virus around here in Emilyomousey and europe that makes people cough for months. My boys and my hubby were coughing NON STOP from november till early march. I have been complaining about that a lot on Facebook, but all in Emilyomouse so you very likely could not read it. I have had tons of people answering saying same for their families. It s a really mean one. I only had it for 4 weeks or so. Our neighbour is coughing since November and still is. Especially at nights. I will maybe have to stab him with a knife one night.
Thanx. I saw you posting on FB yet I do not understand it, yes, I just saw your smile 
I had the most coughing life I remember in my whole 44 years. I could not sleep till 7 AM because I was coughing like every 5 seconds. It was terrible, I didn't know you can cough so much. I was coughing since december but now it is the worse I have ever remembered.At the doctor... it was all dejavu again... She listened to me breathe, said everything is fine, oximetry told her 97% this time which is normal, blood is perfect, no infection noted, x-ray cleared me of tumor (she said), pneumonia and tubercolosis. She told me there are SUSPECTIVE CHANGES FOR ASTHMA though. I was here before! I don't even believe it any more. I have to go to pulmologist now to test for astma. It is like dejavu to me. First I was a suspected glaucoma sufferer and turned out not to be glaucoma after 3 long months, then I was suspected rheumatoid arthritis pacient for 2 months before it turned out they couldn't confirm the suspicion. Now I am suspected asthma sufferer. It is like dejavoo to me and I don't even believe it at this point until I am proven asthma sufferer.I coughed so much all night, I spit yellow mucus now in mornings, this sounds like a bad virus infection of upper respiratory tract. I say here that I belive I will test negative for asthma. But I fear I will have to go to bronchoscopy at the end because they won't find anything and it would just make my anxiety spiral so high. No -scopy was even not severly painfull to me and I will wonder what they will find.I am now almost positive EMG would turn out to be suspicious of something. I am glad I spared myself this one.My twitching is worse then every, I twitch now at 5 places at once, both tights, hips, calves, not to mention foot, also hands (I even shoed it to doctor but she was no neuro). I also have new tingling spots like the mentioned back (month now), numb spot (also in back), I have new tingle/buzzing spots in my foot and on the knee now... I mean, my neuro symptoms are worse then ever. I am still scared of how much worse it can actually go, but I know it can go still worse. I have no clue what it is and I am not even looking for one any more. I am just struggling day by day. Ah yes, I told the doctor that my tungue scares me because when I put it out a little it seems like it is fasciculating all over and she asked me to do it. She told me this is no fasciculation, that this is tremor of the tongue, that is not normal, but it seems my inability to have muscle steady with low contract (also happens with my leg fingers, they tremble when contracted slightly). She told me fasciculating tongue is different and also happens when tongue is in mough not only when I stick it out lighty.The doctor told me I may benefit from some antidepresants as my nerves seem unable to relax (and she noted my pulse was 120, I was sweating all over, my hands were cold), she told me I am way to nervous for a simple x-ray I guess I go celebrate now and will till I have 2 years anniversary. I hope to be able to say about some improvements one day. Take care! I will let you know here about my asthma thing, I know it is not BFS, but nonetheless, for my story to be complete...PS - I now have fasciculations in my soles. I never ever had that :-/
I had the most coughing life I remember in my whole 44 years. I could not sleep till 7 AM because I was coughing like every 5 seconds. It was terrible, I didn't know you can cough so much. I was coughing since december but now it is the worse I have ever remembered.At the doctor... it was all dejavu again... She listened to me breathe, said everything is fine, oximetry told her 97% this time which is normal, blood is perfect, no infection noted, x-ray cleared me of tumor (she said), pneumonia and tubercolosis. She told me there are SUSPECTIVE CHANGES FOR ASTHMA though. I was here before! I don't even believe it any more. I have to go to pulmologist now to test for astma. It is like dejavu to me. First I was a suspected glaucoma sufferer and turned out not to be glaucoma after 3 long months, then I was suspected rheumatoid arthritis pacient for 2 months before it turned out they couldn't confirm the suspicion. Now I am suspected asthma sufferer. It is like dejavoo to me and I don't even believe it at this point until I am proven asthma sufferer.I coughed so much all night, I spit yellow mucus now in mornings, this sounds like a bad virus infection of upper respiratory tract. I say here that I belive I will test negative for asthma. But I fear I will have to go to bronchoscopy at the end because they won't find anything and it would just make my anxiety spiral so high. No -scopy was even not severly painfull to me and I will wonder what they will find.I am now almost positive EMG would turn out to be suspicious of something. I am glad I spared myself this one.My twitching is worse then every, I twitch now at 5 places at once, both tights, hips, calves, not to mention foot, also hands (I even shoed it to doctor but she was no neuro). I also have new tingling spots like the mentioned back (month now), numb spot (also in back), I have new tingle/buzzing spots in my foot and on the knee now... I mean, my neuro symptoms are worse then ever. I am still scared of how much worse it can actually go, but I know it can go still worse. I have no clue what it is and I am not even looking for one any more. I am just struggling day by day. Ah yes, I told the doctor that my tungue scares me because when I put it out a little it seems like it is fasciculating all over and she asked me to do it. She told me this is no fasciculation, that this is tremor of the tongue, that is not normal, but it seems my inability to have muscle steady with low contract (also happens with my leg fingers, they tremble when contracted slightly). She told me fasciculating tongue is different and also happens when tongue is in mough not only when I stick it out lighty.The doctor told me I may benefit from some antidepresants as my nerves seem unable to relax (and she noted my pulse was 120, I was sweating all over, my hands were cold), she told me I am way to nervous for a simple x-ray I guess I go celebrate now and will till I have 2 years anniversary. I hope to be able to say about some improvements one day. Take care! I will let you know here about my asthma thing, I know it is not BFS, but nonetheless, for my story to be complete...PS - I now have fasciculations in my soles. I never ever had that :-/Chrissi, can this increase of fasciculation and tingling everywhere have any connection with severe cough? I mean, you told about overbreathing etc. and if I am coughing 24/7 every 20 seconds, I obviously do not know how I breathe, but it is obvious the gas exchange can not happen very well, does it? I mean, I have 97% oxygen saturation, but how about CO2 levels, that I don't know if they increase or decrease with coughing.
JohnnyRocket
Well-known member
Of course there are reasons/causes for our symptoms. My comment was specificly pointed at the fact that there is basically zero chance for you/us to UNDERSTAND and predict the reasons/causes for the pattern. We know there are multiple causes and factors for twitching and from past experiences we know that focusing on the "whys" and pattern changes feed into the problem and our overall mental state. It leads to a viscious cycle of anxiety and fear. Breaking that cycle by removing focus from the symptoms is key.
Jerry, I am really happy that you don't have anything bad !What about allergy as the root cause of your cough ?Also, I have been diagnosed with asthma while I didn't even suspected I had it as I had no symptoms at all. I was just checking for allergy being the cause of multiple flu like infection and they found out I had small asthma. For now I don't even have a treatment for it because it's not disturbing me but I know that my breathing is not 100% capacity.
I found out when I cough and I severely cough, after coughing I get twitches that last few seconds. Like coughing would induce them. It is like when I stretch my wrist and relax it, somewhere in the hand there would be like 5 twtiches and then stop.Is twitching after extension or how could I ask, after stretch was being done to a muscle, still considered "normal" for BFS-ers? It is not same as tapping a part of the body to see if it twitches (I also have this one, when I get on one side at night and it begins twiotching).But I see the twitches can be induced by such things and that never happened before.
christinasgirl123
Well-known member
Twitching can be triggered by coughing, sneezing, stretching, yawning and-meanest of all- yelling with the kids when they fight again. Perfectly BFS normal.
Thanx. Wierd, hasn't happen to me before except eyelid when yawning...On the other hand I have severe cough now, yellow sputum, no doctors finds what is wrong and why I cough and now I got a low grade fever also today. I twitch like 10x more than usual (every second somewhere) and I don't even care, maybe the cough will kill me anyway.
Well, I promised to update on my coughing issue. I still have this terrible cough every 20 seconds 
If I don't cough the preassure in my chest builds up and I need to.I went to pulmologist who took the spirometry test and my exhale was normal, he told me (80% of air exhaled in first second). I am 92% of my age/weight group which is considered normal as I have sedetary job.I told him my cough made my chest in such pain I can hardly stand up from yesterday. But he told me I have to take anothr xray as he hasn't seen the first one and I have to take asthma test, but he believes I don't have asthma, but a postnasal drip because my nose divider is broken (but it is broken to one side since I remember) or that I may have GERD problems. But I sure do not feel any heartburn, when I had stomach problems years back I didn't cough!Now this kind of things get me scared, it is always same pattern. Nobody seems to be able to find what is wrong with me and after a while I go to doctor and he seems clueless. I mean, I can not cough so much of a postnasal drip and why would I got it so suddenly and can not get rid of it with anything he advised me to do?!It is THEN I start obsessing I have something bad. I mean, my voice seems changed and I have read in a brochure by the doctor that I may have swallowing problems and I am unable to swallow mucus that is normal very vell and I have problems. This is listed as one of the reasons in the brochure. Yes, the neuromuscular bulbar weakness I mean, some people can not swallow in this forum and think of bulbar, I may think of bulbar because I cough. And I may cough because I can not swallow right any more, my tongue has such a bad tremor I may be over the edge here but really, if the doctor could find out what is wrong that I cough so much (and it is not only iritating, it is devastating how much I cough, I can not work, sleep etc.) and give me explanation I would not worry... But he clearly can not find why I cough and he says it is not a lung problem at all in his opinion (he waits for image to confirms this). Well, of course a pulmologist won't even think I may have bulbar ALS now, would he The only hope I got was that I can cough much, means my muscles in chest are strong, but last 2 days I am mostly barking as I can not inhale much because my chest is in such pain because of coughing so much...Now am I completely mad or can ALS really show it this way with coughing because of the swallowing issues? And I noticed first at skiing and now at home, I have hard time pronouncing some letters, like "ch" (š). My wife doesn't even notice this. I really don't know what to do. I still twitch, but at this moment I don't even care, I have a headache because of this cough and it is the most wierd cough I ever had. And doesn't get any better. If this is some bulbar weakening it even won't. I just hope I am wrong in this. I just wish someone would give me some explanation at doctor's... I cough enough to almost throw up or choke. Coughing up clear mucus btw. all the time. Maybe I can not swallow it ok?!
If I don't cough the preassure in my chest builds up and I need to.I went to pulmologist who took the spirometry test and my exhale was normal, he told me (80% of air exhaled in first second). I am 92% of my age/weight group which is considered normal as I have sedetary job.I told him my cough made my chest in such pain I can hardly stand up from yesterday. But he told me I have to take anothr xray as he hasn't seen the first one and I have to take asthma test, but he believes I don't have asthma, but a postnasal drip because my nose divider is broken (but it is broken to one side since I remember) or that I may have GERD problems. But I sure do not feel any heartburn, when I had stomach problems years back I didn't cough!Now this kind of things get me scared, it is always same pattern. Nobody seems to be able to find what is wrong with me and after a while I go to doctor and he seems clueless. I mean, I can not cough so much of a postnasal drip and why would I got it so suddenly and can not get rid of it with anything he advised me to do?!It is THEN I start obsessing I have something bad. I mean, my voice seems changed and I have read in a brochure by the doctor that I may have swallowing problems and I am unable to swallow mucus that is normal very vell and I have problems. This is listed as one of the reasons in the brochure. Yes, the neuromuscular bulbar weakness I mean, some people can not swallow in this forum and think of bulbar, I may think of bulbar because I cough. And I may cough because I can not swallow right any more, my tongue has such a bad tremor I may be over the edge here but really, if the doctor could find out what is wrong that I cough so much (and it is not only iritating, it is devastating how much I cough, I can not work, sleep etc.) and give me explanation I would not worry... But he clearly can not find why I cough and he says it is not a lung problem at all in his opinion (he waits for image to confirms this). Well, of course a pulmologist won't even think I may have bulbar ALS now, would he The only hope I got was that I can cough much, means my muscles in chest are strong, but last 2 days I am mostly barking as I can not inhale much because my chest is in such pain because of coughing so much...Now am I completely mad or can ALS really show it this way with coughing because of the swallowing issues? And I noticed first at skiing and now at home, I have hard time pronouncing some letters, like "ch" (š). My wife doesn't even notice this. I really don't know what to do. I still twitch, but at this moment I don't even care, I have a headache because of this cough and it is the most wierd cough I ever had. And doesn't get any better. If this is some bulbar weakening it even won't. I just hope I am wrong in this. I just wish someone would give me some explanation at doctor's... I cough enough to almost throw up or choke. Coughing up clear mucus btw. all the time. Maybe I can not swallow it ok?!Lots of people have GERD with no feeling of heartburn. People with chronic GERD typcially don't feel that heartburn feeling because its been going on so long. GERD can and does cause chronic dry cough, over production of mucus, chronic sinusitis, among other nasty issues. You are displaying an unhealthy behavior pattern here....you are going to doctors because you don't know whats going on, yet you immediately discredit when they are giving you a diagnosis or an idea of whats going on. This is typical for those of us suffering from hypochondriasis. You have some gastrointestinal issues jerry and I hope you can figure out a way to calm it. My guess is stress is the main culprit as you have tried tinkering with the diet. Stress is going to kill you a few times over before ALS my friend.
What TwitchyAz said.Jerry, you have a virus, and yes - postnasal drip can make you cough that bad. Just last week you said your son had a cough/fever. You caught a new one and it's particularly bad.Only a classic hypochondriac (I am one as well, you know that!) would come up with bulbar from your awful cough. You would know if you couldn't swallow properly.When my daughter (who does have reactive airways) gets post nasal drip, she coughs HORRIBLY. Like all night, no rest, violently. Worse than "chest colds". I know it doesn't seem like post nasal drip would cause such an intense cough, but it does. I have seen it again and again. I hate when her nose is really runny, because I know I'll be up all night trying to get her cough to stop. Sometimes benadryl will help, but last time it led her into pneumonia because she wasn't coughing "out" the mucous like she should have. You should be happy, because a) you don't have lung cancer, and b) you don't have asthma or COPD. There is nothing "serious" left with this cough and the doctor is telling you two very good reasons why you could be coughing like this that are not serious, life-threatening conditions.Trust your doctor, please....then you'll reduce your stress and maybe get past your illness and cough and back to life.Mitra
GERD is really wierd. I don't eat sugar, corn or wheat any longer so I should have less GERD (If I had it before and didn't know). I am not on some low fat diet, I only removed some food everybody agree my body doesn't even need it. That makes me a GERD diagnosis a little unbelievable.
Jerry, one thing for sure, GERD can make you cough. How bad, I dont know, it depends of how long you have problem I suppose. First time I became aware of GERD I had oesophagitis grade A and my cough was pretty bad. I know some people wait too much and presents with grade B or even C. Sugar or fat dont change anything for me. One thing I remember is that I didnt had stomach pain nor burning first time. Only cough and sometime the feeling to swallow something too big. Also mustard would give me instant pain.
GERD might be not always diet related, as far as I understand. you can remove corn, fat or sugar but if you still 'eat' all your fears and troubles, it might cause high reactivity of esophagus still.If chest Xray excluded andy TB or chronic infection, then it must be most probably GERD...
Chest Xray said there are changes like in COPD or chronic asthma. COPD has been said by the doctor it is impossible in 44 year old never smoker and asthma will be taken out of contents in tuesday I guess with metacholine test. The breathing spirometry was normal and that does not support asthma theory.Doctors's theory is that I have a larofaringal problem, that means post nasal drip, broken nose divider (but I always had this!) and probobaly GERD. And this sums him up to the most severe and long lasting clear mucus cough I have ever had in my life. Lol.I asked him if I can have pneumonia, tubercolosis or cancer and he said this problem is not originating from my lungs to his knowledge (not an answer hypohondriac want's to hear, where is it from, then, esophagus cancer or what), but he has to confirm it. And I still don't know how to get myself any better.