29 Year Old German with ALS Symptoms

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SnaxLover1

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Hello my name is Tom, I´m 29 years old and I´m from Emilyomousey.I´m glad that I´ve found this forum. My disease started last year in may. In the beginning, I had pain in the calf musculature and then twitching of muscles in my whole body. At first I meant no harm by it, the diseases increased and I searched in the world wide web after the reason. Of course I came on the one of numerous ALS sites and then the horror started: the pain increased more and more and I got cramps in the muscles and the twitching in the muscles became stronger. I passed no hour without twitching. I´m so afraid that I have ALS, I was in the hospital already and had intensive medical check-ups over 2 days: EMG´s on the whole body without negative results and as well the CK level was below 100. Nevertheless I´m in a very bad condition. I´m at a loss what to do , at the moment I´ve got tension/ hardening in the tongue and I´m so scared that the disease (A**) will start in my tongue. I´m at a loss what to do, pls. advise, as there is no Emilyomouse BFS website existing.
 
hello there,try to stay calm, as everyone here knows once the panic sets in it's even more of a struggle than just the twitches. a two day examination sounds extremely thorough, and a clean emg excellent. many of us here twitch all over, have muscle pain and cramps. don't google your symptoms. stick with your neuro, it sounds like they think your fine. your probably another one of us. hang in, keep exercising, eat well, and if you need help with the anxitey speak to ya doctor.regardssharon.
 
Rest assured that if you had anything sinister after 1 year, clean emg, low ck levels, then you are okay. My tongue will get tense at times too. Do you grind your teeth or clinch your jaw? Try relaxing your whole mouth. Anxiety can cause loads of bizarre symptoms. Check out In the mean time---don't panic, you're okay :p We've all been where you are and I still go there sometimes. Today has been a little rough for me too. But I know tomorrow will be better.Best WishesCindy
 
Hey Tom-I would like to welcome you to the world of BFS. One thing that I never understood was "why dont these twitches ever stop" and "well why didnt I feel like that last week". Both of these issues are due to what we all share here on this site. Please read this from my last neuro as it was VERY recent:First off we all get into the pattern of "what if I am the extreme example or the doctors missed something". BFS is like a roller coaster. You start twitching and having symptoms and really dont worry. Then you might see a doctor or "google" twitching and go right into total panic. For me I was fine for about 6 months of twitching that increased until I was having EXTREME tremors to where my limbs would go crazy when I would lift something or do fine movements. Then I went for my first EMG (clean). I was fine for a few weeks then went back into a panic and saw another neuro and had another EMG (clear). My twitching is hitting about 2 solid years now NON STOP! I mean non stop. The only time I dont feel them is when I am asleep. They are focalized in my left foot ALL THE TIME! I have had every symptom that most people on here have. I had a period where I could not chew my food and my jaw was getting tired easily and my tongue was tired all the time also. So after about 15 clinical exams and 3 EMG's I went to the final neuro last month to just get a 2nd oppinion and more answers. Both of those doctors worked and did their residency at the MAYO in Rodchester, MN....and they are VERY highly respected here in Columbus Ohio. So anyway.....thats my history.Please listen to this and try to open your mind to what I am saying (its REALLY hard I know cause I went through it). Anxiety really can cause you to feel weak, bumble your words, walk funny and think that something is REALLY wrong with you. I had months of checking my tongue, walkling like a robot and anxiety so bad I called off work for days at a time. Please understand though that your symptoms are not CAUSED by anxiety (that would be the tremors, twitching, cramping). They are caused by an unknown syndrome that we (and good neuros) call BFS. Anxiety can increase these symptoms and cause you to think that something on your body is not working right and it is. Please read this line and trust me with it. I spent months and months overlooking what my neuros were telling me but I never trusted them. Here it is:ALS is a disease of CLINICAL weakness (not of "I think my leg is not working as good"). My first neuro said "Sean with ALS you have definate weakness and it goes forward progressively". BOTH neuros told me that a CLINICAL test is all that is needed to tell of ANY hint of ALS and then if anything is picked up they can test further with the EMG. Both told me that my EMG's were to rule out anything else and give me piece of mind. This is from both neuro's also "Sean with ALS within around a month of symptoms your clinical exam would show problems and the EMG would DEFINATELY show clear signs of MND along with the NCV results". My last neuro looked at my twitches (which are very bad all over non stop) and said "well Sean this is very common and the cramping and tremors all fit the pattern of BFS...after a few months of no clinical weakness and certainly with an EMG ALS is completely out of the question for you". Basically thats what the other neuro told me but I didnt listen to him. This was also confirmed to me by a co-worker this past week who had an uncle with ALS. He started tripping and falling and twitching and they diagnosed him in 6 weeks! My doctor told me that she was 100% confident that I didnt need ANY more tests even with my symptoms and visible twitches.So I just want you to know that everthing I say is directly from excellent neurologists and I spent hours and hours with them face to face. You have had the tests, they all were clear for ALS. Now you have to say to yourself "ok so I may have twitches for another 6 months or for the rest of my life...so what do I do now". We worry about us being the 1 in xxxxxxxxx that are the exception to the rule but we have had the tests that rule out us being an exception! I had to take effexor to break my anxiety. It is COMPLETELY disabling. We are talking I have only been sane for maybe 2 months now at the most. The past 2 years were horrible for me. So if the anxiety is causing you not to sleep, have problems at work or home I would suggest trying something to bring your anxiety level down until you can really beleive that "everything is ok". But be warned SSRI's will increase your symtpoms and are ONLY!!!!! to be used if you are having major problems functioning in your daily life. My neuro said "Sean we have no treatment for BFS. We can give you medications to dull some sensation or cause you to slow down but nothing will prevent the twitches or slow t hem down"...I told her "im fine with twitching and cramping and tremoring the rest of my life as long as I know its not ALS"...she said "Sean you are fine and I am not concerned at all for you...if you want any meds just call me but you will find out that your symptoms are better without them"...and she was right! I am always available for PM and I encourage you to go back and look at my posts here for the past year or so. They will show you that you are going through the exact same pattern that I did and there is nothing wrong with how your are feeling. I always said "I never feel like Sean anymore" Well we have to get you to feel like Tom again. You will still twitch and have symptoms, but without the anxiety you can overlook most of them and enjoy life again as before. Remember this: BFS is a syndrome that changes and has NO set pattern. Because your symptoms change over time means nothing except you fit the pattern of BFS. Some days are good, and others are horrible. Take up a new hobby and spend time with your family. Stay off the computer looking for an answer because there is no cure for BFS. Remember that the doctors you went to see are the experts, not google and not anyone else on ANY other forum! All the internet opens you up to is more ways to get scared when really you saw the doctor that can tell you whats NOT wrong with you (ALS). Anxiety is always waiting in the back of your mind to find a way to come out. If you give yourself ways to look up info that does not pertain to you then the anxiety will NEVER go away. This is a good site but there are also many posts of concerned individuals that read things on the internet and can get others into a panic (not intentionally). Read the positive and skip the negative. Remember NONE of us on here have been diagnosed with ALS. We have symptoms of a disorder that mimics a FEW symptoms of ALS but thats where the similarity ends. So keep positive, enjoy life and do the things you love to do. Get out of the house and visit with some old friends. In time this will all slow down and you will not even care about it anymore. Just hang in there, I promise you will understand what I am saying soon...it just takes time and we all have to find out way of of the anxiety this causes.Best of luck to you...if you need anything just send me a PM. I have tons of info thats from the neuros and my test results. Sean
 
Hello there Foo! Mariaj, Sean, Cindy, (ehhh, I think I got ya all)... Foo what your being told is completely the truth- I would just be echoing everything everyone has said so I will spare ya the time. I just wanted to put my few cents in about the anxiety and the relation. I too am sorta in the up n up about anxiety being the main culprit of the twitches. However- When I had my first round of twitching- I had gone through lexapro ( a ssri) withdrawal...and at about the same down..around then came down w/ walking Pneumonia. When I had first asked my MD about the sporatic random twitches- he shook his head, said nothing to worry with, anxiety etc. in the meanwhile You have walking pneumonia. I didn't think I had anxiety at the time, BUT....I was coming off of lexapro which caused me to have a break down so in one sense I guess you could say "that is anxiety related". Now with this second round of twitching- I was under A LOT of ANXIETY! 1.Pregnant with my first child. 2.) Losing a patient I was very close too and had been a care giver to for a couple of years. 3.) I had just began babysitting my 3 yr old neice and 3 month nephew 4 days week. 4.) I was EXTREMELY SCARED over a health test I had to have that I FEARED the worse for. However...Since I've been pregnant I have suffered from bad sinus's..in which there is nothing major I can do for them b/c Im pregnant...SO? that makes me think....IS it autoimmune, viral etc. or was it my anxiety. Its hard to say. I know that all my doctors I have been to say "you need to get a hold of your anxiety" , and they seem to relate it to anxiety however...you will see on here a few neuro's do not believe that at all. I really just dont think THEY KNOW! and I think ANXIETY can make something thats not so BAD...SOMETHING AWFUL! Esp when the FEAR sets in. So I agree when people and the doctors tell me to get a hold of my anxiety before it gets the best of me. I find on days I am carefree having fun...I dont notice the twitches, but if something gets me bent outta shape...Im freaking out..Not like I used to do tho. NOW! With the SSRI's....I have to agree w/ Sean and his NEURO that it MAKES THE TWITCHES A LOT WORSE. I take prozac every other day and Klonapin 1mg. or half as needed at night for nerves. On the days I take the PROZAC I twitch a lot worse than on the day I dont take it. Infact I am ready to mention this to my psychiatrist this week. The Klonapin definately helps 85% I'd say...but its NOT a cure. However if your ANXIETY is getting the best of you- I'd start a medication until you can get over this little hump!!! :sick: Best Wishes! Lovely
 
Hi there,You are just like so many of us and it sounds like nothing more than BFS. You are ok...the tests you had proved that. It is hard to stay calm, but it WILL get better with time. I've been twitching for almost a year now (at the end of April it will be one year) and although I'm still scared, I am MUCH better than I was, although there are days when I am terrified. Hang in there, we are all here for you!!!
 
Hi there-Mariaj I completely agree with you, however I really wanted to beleive that anxiety was my cause and it was not. I had just been promoted at work, purchased a house and was having some of the best days of my life when my twitches started. Both my neuros indicated to me that anxiety increases your symptoms and they also beleived that many of us twitch and do not know it (I had ones that I never saw or felt that my last neuro clearly saw). They both beleive that this is a condition that has no known trigger why it begins in us (several ideas but no clear answer), but that anxiety brings out the symptoms and increases them. Thus you would not feel the twitches under normal circumstances but when you were stressed you would feel them (that didnt mean you didnt have them until you were stressed....but that you had them all along and they did not raise any red flags to you)...does that explain it a bit better? The vast majority of us have tried many medications to stop the twitches..and many of these take away most of the anxiety (or are designed to) and they dont work to take away the twitches. My feeling is that if anxiety plays any part in the physical mecanism that is causing them, then SOME medicaiton should work. So in my case I was taking effexor and if someone would have blown my car up outside I would have just stood up and peeped out the window without any excitement. But I still twitched...I just didnt pay as much attention to it and freak out all the time. I think stress and anxiety can do anything to you, and maybe it causes you body to break down and the stress overloads your nervous system...and opens the door for the twitching to start. I can agree with that....but I think the docs are just saying that anxiety does not cause it to begin....but honestly they dont know anything about why it happens =)Sean
 
Hi Sean,I guess we can agree to disagree. We're only human with our own opinions. I think there are various schools of thought about this. I would even imagine that even in the medical profession there would various theories as to why this happens. I can understand where you're coming from. You obviously were having a stress free life when this twitching started. I can't say the same for me. I've been through the worst period of my life, and it's not exactly getting better, with chronic worries last year. This anxiety then manifest itself into twitching. I believe there is more than one reason why this happens to us. Anyway I'd like to think we're having a healthy/friendly debate over this. No harm intended, just a different opinion.CheersMaria
 
Maria. We wouldnt be human if we didnt agree to disagee ;) I like you this past bout of twitches were going through HORRID stress. Soooooo, I totally can say I think this past bout was due from stress. B/c as I have eliminated my stress so have my twitches!!! Ya know? but again, I think there can be a lot of causes from this. I PERSONALLY BELIEVE it has to do w/ the prescription drugs I was on before for A.D.D. they were STIMULANTS...and what do STIMULANTS DO??? hmmmmm?? Cheers to you Mariaj....(i'd love a glass of wine, only 4 more months) :sick:
 
thanks al lot for your helpful words. I try to stay calm. At the moment my tongue feels very heavy, and sometimes it is very difficult to speak. Has anyone of you similar problems?I´m glad that I´m not the only one with these problems.Thanks for your support. cheers and thanks
 
Hey there- a lot of people on this forum have experienced this. I myself have not. But if you look up anxiety and the symptoms...you will see exactly what you are describing. I promise you are ok!
 
Hello it`s me aggain. I´ve got one question: is it normal for the BFS syndrom that I have pain in my calves? I have the pain since two weeks and the pain appears on the lower part of the calves. I take magnesium since christmas but nothing happens.If someone of you has the same issues pls. advise.Thanks a lottom
 
Steps to take:1. Neurologist2. Klonopin3. EMG by neurologist eliminates ALS. However 50 years from now anyone of us could get ALS But we could also die in a car crash this afternoon. 4. It's definatly not ALS its probably BCFS/BFS. 5. Pain is common with BCFS but very uncommon in ALS6. Constant twidespread witching is not indicative of ALS. In fact it leads away from ALS.7. Low CK level means muscle is not breaking down. This is good!8. I get the tongue cramping all the time. No big deal for me anymore!9. Once you have settled your nerves try to come off medication...if possible!Best of luck! Its not ALS.
 
Hey Foo, I love that band "The foo fighters" by the way. I just read myself on MEDHELP that PAIN/ SENSORY Is not a symptom of als except VERY VERY VERY RARE EXTREME cases. I googled that b/c I have off and on shoulder pain- prob from all the stupid self testing I have done. Your at the 5month mark w/ this stuff I think with this correct??? Plus you beat me, you've had 2 EMG's, I have not. Docs dont see it deemed necessary and wont even mention it to me. What you have sounds like BCFS! Its the Benign Cramp Fasic Syndrome. A Lot on here experience it. Its not rare in bfs at all...just pain in ALS is VERY VERY VERY RARE. Remember your at the 5 month mark if not more..IF it was *** for ONE your EMGs would have been more than enough, after your clinical to reassure you that your FINE!!! Just like me, you have the "What if" days..they suck. Go have a drink.. Relax. If I wasn't pregnant I'd go have a bottle lol. :sick: Lovely
 
hi, my experience has been really bad calf muscle pain. take a squizz at some of my posts, all i do is complain about my crappy aching legs. :rolleyes: cheerssharon.
 
hellohow are you? Haven´t written anything for a longer time... My condition is not better... I´ve got two questions: 1. Is it possible that ALS starts in the face area ? ( chewing musculature, I´ve got strong twitching on my cheek.)2. I´ve got strong issues in my tongue. No twitching, in the tongue but I´ve got very strong pain in my lingual frenum. Does anybody of you have the same problems? Pls. advise.cheers foo fighter
 
Very helpful. I have been having trouble recently where it feels like I am having to take deep breaths or yawn to catch my breath...and it is explained exactly on here...I wish I cud stop worrying about these symptoms...I WILL beat them and YOU WILL too.
 

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