Anxious over Possible *** Diagnosis

Highlights Only
It's not that you are off base, it is that you are looking at it the wrong way. The way you are looking at it is "OMG, I have two years of freedom, and then after that all hell is going to break loose." That simply isn't true at all. Who knows what is going to happen in two years? A plane could fall out of the sky and land on your house. You have no idea what will happen in two years, and neither do any of us.Once you start getting into anxiety and anxiety counseling, this is the type of thinking you will probably be working on. It is called catastrophic thinking, and it is where your mind immediately zooms to the worst possible case scenario and it is all you focus on. Castastrophic future thinking is the worst possible think you can do with your life (it is the reason most Americans tend to live in a culture of fear), and you will be amazed when you start to work on it how often you have been doing it. Here are what the facts are at the moment, and none of these are disputable:1. You have been cleared by a neuro of having anything serious2. You don't have anything serious3. BFS does not turn into anything seriousYeah your body is doing weird things, but that's kind of the definition of what BFS does. It gives you hyperactive nerves, so you start feeling and sensing things that normally aren't there (or in some cases, that really -aren't- there.) But that's it. You have BFS. BFS is not serious. Go read those three points I listed above, and remember them every time you start to walk down a path of catastrophic thinking.Will you be fine in two years? Sh*t, who knows? Who knows if I will be fine in two years. Who knows if we won't be all destroyed by an asteroid. All I -do- know is that nothing you have now will affect you in two years. In two years whatever happens to you will have nothing to do with your BFS or your BFS symptoms. In two years (if you are like most healthophobes), hell, you'll probably be worried that now you have brain cancer. This is what healthophobes do. We zero in on the worst possible case medical scenario, and we find some way to convince ourselves that we have it. I do that myself, you are doing that too, and it is time that you really need to start working on that.Signed, Mario LanzaUpland, CAA proud Survivor of AIDS (three times), lung cancer (twice), melanoma (12 times), bowel cancer (3 times), pancreatic cancer (twice), and ALS (ten times). Man, it is amazing how we healthophobes are able to conquer all these amazingly rare and fatal diseases.
 
Johnny,I completely understand what you are saying. I agree with that outlook and I agree that I need to change mine. I'm in the process and already feeling much better! But I know that I have a long way to go. All I meant by the "2 year thing" was that even during my difficult times of worry, I can rest assured that the thing I had been scared of isn't in my system for at least the next 2 years, and hopefully never. That is all I meant. I'm not going to live by the motto, "I have 2 years left," I didn't mean that at all! That would be quite scary. Again, I'm thankful for this site. I hope to one day be a "Veteran" member calming down people who will have gone through a week like the one I just had. And it is comforting knowing that many people had already gone through the same thing and came out fine on the other end of the tunnel. And now that I think about it, my mouth symptoms may in fact be part of something totally unrelated -- because I'm starting to develop canker sores and 2 other small white spots behind my back teeth on the gums that hurt when I touch them with my tongue. Probably all from stress.
 
I don't know how true it is, But I was told by a member on here that an EMG can find damage being caused by our fear for up to two years before you have any symptoms. Can anybody verify this? I know what your asking, and so does everybody else. But you do not have it, and that does not mean in no way that you will three years down the road. Just no way to tell. Just remember like DD said in one of his posts, "life is 100% fatal" and we were all born to die. But there is alot of living in between. I have lost 11 months of mine because of twitching, they are people with deadly diseases living a more quality life than me. Start moving foward and don't stop like I did.....
 
abbitBouncyBunny, it can be true in some cases. Patients with ALS detect weakness when more than 50% of motor neurons are lost also it surely can be detected in advance. Mostly its months, based on experience with patients who have e.g. one limb affected but EMG detects changes in asymptomatic limb which remains OK for next 6-12 months.
 
ClearShakes: You probabably did not get it. Actually its good news - the EMG is able to detect changes before patient notices anything /weakness or twitching/ in advance, like 2-3 months for sure. If you had ALS, your EMG would be dirty by now and also some time ago before your twitches started!Also word of caution: the stories on internet of people who had clean EMG and then ALS, please realize that EMG can pick up only lower motor neurons damage but ALS can start with upper motor neuron damage which produces more generalized weakness and not twitching. These people do not twitch or twitch slightly but have clear UMN signs, however their EMG is normal for a while, so do not worry if you trip over such a story.If you have twitching and normal EMG, you do not need to worry!
 
Twitchy,Well I'm tripping now! I thought my EMG of the legs in May and now Tongue in July had me set on a clear course to recovery. However, I could have the one where the EMG doesn't pick it up...or, my twtiching could now just be the beginning of it.
 
Or... simultaneous twitching in the legs and tongue couldn't possibly be ALS because ALS doesn't work that way. There's another way to look at it.
 
Ohh and by the way. I've had one EMG that was done in March which was clean. I asked him to give me another one and he refused. Said it wasn't necessary and come back and see him in 6 months if I want to.
 
I have had BFS for anywhere from four to twenty years (it is hard to say), and I have never had an EMG. I asked my neuro about it once and he refused to give me one. He said it would be a waste of money. He also said he refuses to give pointless EMGs because in his own words "they hurt." He said as a doctor he doesn't like hurting his patients for no reason, and that is exactly what he would be doing if he started giving people with benign fasciculations pointless EMGs.
 
Mario and other Vets,After learning about this upper motor thing, I'm now horrified again. I don't even really want to know anything else about it. I wish I hadn't heard about it today. But, maybe that is what I have...Because my symptoms are still ever-present
 
Johnny,You the man! Thanks for that logic! It has been a slow process for me, and I keep going back to my doubts, literally everyday. But now finally instead of 5 steps back and 1 step forward, it is turning into 2 steps forward and 1 step back. I need to realize I'm fine. Everyone else has. I need to truth the evidence and the facts, and see that I'm a perfect example of BFS. I'm trying. I also need to stop reading into things and insists on finding the "what-ifs" out there. The more I learn about *** the more afraid I become. I think I should just come here once in a while, instead of religiously everyday, because the more I search the more worried I become. The more I doubt that I'm okay. That is what I'm going to do until I start to feel better, and than hopefully one day I can become of some help to people. I really need to thank people like Mario, Johnny, LondonMommy, Twin, etc. etc. all of the "veterans,"Because you guys have provided me with much relief and understanding during this horrible time of anxiety and fear. I can't say it enough. THANK YOU!I will be back tonight to check on this post, and then in a few days for an update.Thanks again to everyone who has helped me through this. Thankfully, like almost all of the people on this forum, I'M FINE!!
 
Invisible: You obviously entirely did not get what I was telling you! Its kinda frustrating..I will make it in points:-ALS patients can and mostly have EMG changes prior to any symptoms, including twitching. That means by the time you twitch, EMG would show much mroe than only fasciculations.-Clean EMG with upper motor neuron signs is nothing special but you DONT have any upper motor neuron signs. These are mainly pathologalically brisk reflexes (not just increased), pathologic ones (Babinsky, Hoffman), primitive reflexes, spasticity...all EASILY detectable during clinical exam.-ALS fasciculations, in the beginning, are localized in one area, not widespread to whole body. As the disease progresses, more regions are being affected along with weakness and wasting. Denervation will not happen at all places in the same time, ALS has well known pattern.Summary: With clean EMG and without upper motor neuron signs, you do not have ALS. Even the short tongue EMG would detect fibrillations which are regular and continous, unlike sporadic fasciculations.Hope now its clear to you
 
Hi thereYou are no different to the way many of us were at the height of our anxieties over BFS. I urge you to go , join up for I think $20 and there you will have a mountain of info as to what anxiety can do to you and also how to recover from it plus the process of recovery from anxiety. I once received counselling from them and I credit them entirely for my complete recovery...I don't twitch any more yet I was convinced I had ALS. t took ages for them to go away and they did...no twitching for 2 years now.At the beginning of my nightmare i was no poster child for accepting this as a benign diagnosis. I went on and on and on about me having this deadly disease for absolutely ages. I was gripped with fear as you are. I really think you need to somehow reach a stage in your mind where you accept that there is nothing physiologically worng with you. All the evidence from the neuro points to that. It is your fear that is the problem. I however think reassurance from all of us only goes so far before the fear cycle begins yet again. you are in a heightened sense of anxiety and the fear centre of your brain (I believe the amygdala) is over stimulated. I learnt that you don't conquer this fear over night. It is a step by step process and it really can be 2 steps forward and one step backwards. Sometimes even a giant step backwards. But you mustn't give up ever. You remain positive, you think positive. If fear creeps in, which I assure you it will, do your BEST to stop it or at least reduce it. Over time you fears will lessen until they go away. I believe the key is to wholeheartedly believe and ACCEPT that you are ok. Now when you do eventually stop being fearful don't dwell on as to why the symptoms haven't gone away. Let them come and go. be dismissive of them. Be indifferent towards thems. Don't let them control you. Go out and live your life and let those twitches comes along for the ride. You may find they will start to settle down, then ramp up again (at this point do not get scared again as you will only fuel them), then start to settle down again, ramp up again then potentially go away entirely. If they don't, don't dwell on it. just go with it. Do not give them the power to spoil you life as it is the anxiety over this that is giving you such hardship now.cheers maria
 
When I was going through the height of my anxiety, I read a wonderful easy to read book about living in the now. It really helped me put things into a better perspective.
 
One last question before I take a few days away from the internet:I'm still really having trouble speaking, due to excess saliva and a constant feeling that food is stuck in the back of my throat. This continues to be my main cause of worry, for it is very new, but has now lasted over a week. I'm just curious, how many people have had this? How normal is it? And if so, how long did it last? It is driving me crazy, and is really fuelling my worry at this point. Everytime I eat I feel like food is getting caught back there, and it doesn't help that I do have the tendency towards tonsil stones. I'd love some insight on this to take away with me for a few days. This continues to be my biggest scare to this point. Along with the tongue constantly twitching when I stick it out, but I think that is normal.
 
The feeling of food being stuck in your throat is 100% anxiety and nearly everyone here has had it at some point. In fact the minute a person starts talking about that particular sensation (newbies always do) that is generally the first indicator that what we are dealing with here is a panic attack. Once the "food sensation" symptoms come up, all you are going to get from people is anxiety advice.The technical term for "food stuck in the throat" is Globus Hystericus. Do some research on that and you will learn all about it. Globus Hystericus is very common, and it has nothing to do with BFS, ALS, or any sinister disease at all. It just means your body is in a state of panic and it is tightening up. And when that happens, the first things that constrict are your eating and breathing passages.Here is a good starting point for you: Here is another:
 

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