Long Essay Ahead: Beware!

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Thanks Robynn. Glad to hear you are doing better these days too. At the beginning I think you were wrapped up in anxiety as tightly as anyone I have ever seen. You have come a long way, you should be proud of yourself. :)
 
Thanks Mario, I am quite proud of myself...but it was hard to snap out of it. In the beginning..I was one of your worst because I was about the only one being told they had ankle clonus (along with all the other strange symptoms we get here) but ankle clonus is supposed to be a sure sign of Upper Motor Neuron Damage...Still got the clonus, but nothing other then BFS symptoms have come about...so I just decided I was going to pretend and live like I dont have the ankle clonus and get on with things. It was the best decision I could have ever made and I will continue to live until I cant. BFS, you, and this board have tought me life is to be lived, not wasted. Like Darr said on his goodbye thread....I choose LIFE.Thanks for all your wisdom and support Mario.Take care uRobynn :D)
 
When I first starting twitching your story was one of the first I read. I have to admit I actually printed it out and reread it over and over. It helped me tons. You have helped me and so many others on this board. I'm glad you continue to post.
 
Hi again, interesting that you bring up itching, I have been itching like a crazy woman since all this bfs rubbish started..does anyone else itch? Interesting...thanks again... :)
 
I actually had the side of the nose crawly about ten years before BFS. I remember telling my wife about it at a chick fi-let one day, it had been going for several weeks at the time, she just looked at me weird and said "OK"... :LOL: Then for three years straight I had a feeling(and still do) across my back from shoulder to shoulder that feels like a wet shirt sticking to my skin. My wife would say it's just dry skin and laugh at me in a cute sort of way....Then Fasiculations/google got a hold on me and would not let go, I will admit to not being a very intelligent man, so I had no fear of any of it being a neauro disease, I thought it was from my back injury, which I was panicking about having to have surgery. I thought the buzzing and twitches was from a disc out of place laying on a nerve.Well me being the terriable speller that I am, my couisin introduced me to google for spell check. So I think to my self why not type in body wide twitches and see what is causing these(again I'm thinking disc and am really scared that is what it was going to say) Then Bam, google said go buy a grave plot fat man, your going down.... :unsure: Sorry for the ramble, Awesome write up Mario!! And I also say, please make this a STICKY!!!!!!!!!!!!!!!!!!!!By the way, do you get any eye symptom's? That has been my latest freak out.....
 
Mario,Excellent work, excellent post. You were the first person to respond to my first pathetic post at aboutBFS early last year, me being too scared to even post here until after I had an EMG, because I somehow in my silly mind I had convinced myself I had ALS. You are known in my house as "the clown', if you remember your old photo . . . These days I don't even give a *beep* about my twitches. You know how it goes. Thanks again!
 
Shanny...here is a survey that I put together some time back about "the other BFS symptoms" and I asked people how many of them had sneezing and itching....I have had both in the worst way since I got this stuff....several responded that they had noticed this stuff too...I was later harassed a bit for putting these two symptoms in my survey, but as you can see...others had noticed these things as well. As good as I'm feeling these days....I still sneeze like I have allergies when I dont, and I itch often like I have poison ivy but never have...fun, fun. Heres the link to one of my surveys Take careRobynn :D)
 
Mario, this is an awesome post. And I can see so much truth in it, so many things I have felt before. Actually, that was what I felt when the BFS-Symptoms started, like tons of adrenalin rushing through my veins. I have felt like BFS before, about 12 years ago.Me and my hubby had a really bad motorbike accident in the woods, I felt how the bike slipped in a corner with over 100km/h and saw the trees in front of me and at this moment i knew I was going to die.....somehow missed the last tree in this wood and was slammed into a potatoe field. It took me several minutes to figure out I was not dead and OK, although the bike was an absolute mess and could't be repaired. After getting up from the ground, I felt all the BFS-stuff for the next days. The friend that picked us up had to carry me on his arms because I had the jelly legs, the tremors, and I could't stand loud noises for weeks. I remember that I even twitched a lot!!I really agree with these theories you wrote, I had some living hell the last couple of years. After many misscarriages and a really bad pregnancy my son had near-sids and was put on an apnea-monitor for 2 years. He had it really bad,the monitor alarmed up to 10 times a night when he stopped breathing and I had to stimulate him . My body was in alarm every single minute of my days and nights. Then my second son was born and checked in hospital and guess what...he had the same crap. So I had almost 4 years not sleeping really deep because of fearing that your child will stop breathing forever. Not to mention the many times in hospital when they didn't let us go home because the oxygen-saturations were so bad. And then there was so much other *..* I think this all and a bad viral infection brought me to this point. I'm trying to calm down , I'm working on this. I'm taking anxiety-medication and I'm starting psycho therapie an monday. But I have to say, this website was one of the most helpful things for the last weeks. And this post, I'm going to print out and stick in my wallet (where I already have "why you don't have ALS"). Just in case I have a panic attack anywhere where I can't get to the computer......You veterans, you are such a big help. I don't know where I would be right now if I hadn't found this website...
 
Any noise during sleep will make me freak out at this point. And also in normal live. I thought maybe due to the monitor alarms in the past, when I had to jump out of bed immediately. But I've heard a lot of BFSers that share this. Last night I was startled like hell by my husband flushing the toilet 4 rooms away from sleeping room....not to mention that he came back, laid down and stared to snore immediatley, while I was lying awake shaking and nervous for almost an hour... :rolleyes:
 
Interesting to read that here. I was having eye migrains long before BFS onset as well as floaters and flashes. It really was scared my but my ophtalamist said, this is very common for...stress. I think eye migraines are very scary. I had to stop once at the road because I had one. Do you lose your whole field of vision (I do) on the affected eye, or only parts? Hopefully this never happens with 2 eyes at the same time, or I'll be blind for half an hour...
 
The migraine, I also know!2 years ago that was a couple of times!I could see nothing and my tongue was numb, and then I can not speak properly!Was in the hospital because I thought I had a stroke!But everything was okay!... I saw nothing more in both eyes!!
 
You can google astigmatism, it is nothing scary. It just means that your cornea is oval shaped instead of round. So the light bounces off it at weird angles and you get refraction problems sometimes (like double images). A non scary link, I promise: )
 
MarioGreat post. I hope it isnt your swan song!When i first came down with BFS 18 months ago and found this board i though you were mean. I said "why is this guy so direct and cavalier about his symptoms...why does he basically just tell people to stop crying and move on with life" I soon leaned why that is needed and i cant say enough how much i appreciate all that you have done for this board. People like you are so vital because you have been through it all. When BFS hit me i want to see my best friend who is a MD at the mayo clinic in Rochester MN. He examined me at his house and said...I dont know what you have but it isnt not ALS...now lets go get some pizza." I of course didn't believe him...i mean after all what does he know. So i went to my primary MD and a Neuro who all said the same thing. The problem is they had no idea what is going through. My twitches have come down about 50-70% over the last 6 months. I would agree with you that anxiety played a major major major role in my condition. I truly believe i am on my way to a full recovery.Thanks again for all that you do
 
mario, another fellow californian!! i live in the antelope valley.That's not too far from Upland. I don't know why but I feel better the more people I see live near me. Great, Great post. It actually almost made me cry. I needed to read this. Thanks for taking the time to post this.Tanya
 
Mario, dude, you ROCK! That was an awesome post, and I vote that it be made a sticky, too. I think I shared on another thread recently that my husband, who had believed himself cured of bfs for about 10 years, has recently developed leg weakness and said, (to my utter surprise and amusement,) "I think my bfs is acting up." I find that my symptoms are minimal, for the most part. I can't remember the last time I had a fasciculation; though knowing this silly, goofy li'l syndrome, I'll probably twitch all night long and have a new hot spot tomorrow, just for being c-ocky, tonight. ;)Blessings y'all from hurricane-ville. :)Suz
 
1. I fully agree with mario2. Anxiety and stress do cause changes in the body over time that lead to REAL disease, it took me a long time to realize this, there are recent studies that prove adrenaline modifies DNA.3. I just pray to god this is reversable and that i didn't trigger anything else ...PS. My neurologist also told me that if i was dumber i would have no issue.
 
It's true though. You should take a look at the collective IQ of the people on this board. People who get BFS tend to know way too much than is good for them. Why do you think we are all smug annoying know it alls around here? :D)
 
Yep we think too much, we know too much, and we analyse everything to death...somewhat dangerous traits to have unless you are studying to be a scientist or something to that effect :LOL:
 

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