Aa
ALS?/BFS?/Anxiety?? Please help
Hi, I am a 26 year old male who is have a bit of troubles. Basically i'll start at the beginning of my issues. I quit my job at the gym about the end of November of last year. Within about 2 months I started noticing my eyes were somewhat sensitive to the light and everytime I would come into a lighted area I would get these black stringy things and sometime dots that would float across my feild of vision. At first I ignored it and moved on. Then I would say about the beginning of April the things floating around became more and more pronounced. I would see them often and many at a time. Well it started to really **** me off so I went to the eye doctor and he had told me that my vision was fine and it could be some neurologically. So he told me if I develop any unusual symptoms with these to call him and he will refer me to a specialist. Well I caught some slight dizziness along with them and of course went to see an eye specialist and he said I was fine and he can't seem to find anything wrong with me. He referred me to a Retina specialist who told me I have a tiny tear in my retina and I am expieriencing floaters and flashes because of the excess colligan in my viterous gel of my eye. Apparently this is not as uncommon as I thought and many people have the problem, just not as bad as I have it. But she also gave me bits of information on it. It seems that the brain is responsible for zapping the colligan and keeping it to a minimum. After that was said and done more problems seemed to arise.
I had recently went on a trip to Hawaii in late May and returned early April. When I came back along with the eye problems came these ungodly ear infections that would no cease. It started in my left ear. Basically to sum it up, I ended up with about 4-5 ear infections over the course of a little less then 2 months I think. I was on about 3 different medications total. Well neeedless to say they went way.
I finally thought that I was going to feel fine after all that when I started having stomach problems which followed almost a week to three weeks after the ear infections. I am sorry if I am a little graphic with the description but i'll try and narrow it down. Basically everytime I ate something I would go to the bathroom within the next 20 minutes, and it was green. This probably took place for i'd say a good week and a half before it haulted and seemed to almost rearrange my bowel habbits. For some reason I am pretty regular now unlike before when sometimes I would go almost a week without a bowel movement. But that seems fine now and has went away.
I'd say the last week of stomach problems I had gone to work with my girlfriends father who installs carpet for a living. I did some heavy lifting but nothing that seemed out of the ordinary. But within a week or so after that day I developed this weird feeling in my side of my stomach and what seemed to be my hip bone. It wasn't extremely painful but I did have a dull ache to it. So after awhile of it being a nuissance I went to the ER and they did an ultra sound of my stomach and found nothing and brushed it off as just a pain. So I accepted that and made a follow up with my general practioner. He also found nothing and sent me on my way.
Well this is what brings me to this site today. About 2-3 months ago a little after my doctor's appointment I developed a twitch in my right leg. It lasted i'd say almost 2-3 days of it being a constant twitch. I didn't think anything of it. But About almost 1 1/2 months which brings us to about 1 week before the present. I have been getting twitches all over. Mostly in my lower torso. But I get them in my arms near the elbow, both my thighs, my glutes and buttocks, my calfs and feet, and occasionally my head. I have noticed that both my thigh muscles are extremely tight. They seem no longer sore but very tight and stiff as well as the side of my calf muscles. I tried to play basketball with my cousin about a week ago and I was able to job and bear weight on my legs but I noticed that I could very easily feel the stifness in both my legs. It didn't hurt all that much but did feel uncomfortable even though I tried not to do anything strenuous when I first noticed it.
Well I had went to the doctors with this and he had brushed it off as being an onset of anxiety and prescribed me with Amitriptyline and sent me on my way. He did a full blood work up on me when all my systems started and said that there was nothing wrong with me. Just to let you know I've had quite a big of onset panic attacks over the prolonged time from when I came back from my trip. Basically what I am asking is can my symptoms be the cause of ALS or could it just be anxiety? I am a worry wort and freak out about a lot of things. Also I have borderline high blood pressure and I was an avid person who worked about and was generally healthy when I worked at the gym. I had gained about 25 pounds since and just started to try and get back into the workout groove. Sorry for such a long post but hopefully you can help me out and maybe clear up some questions and concerns I have about this being possible ALS. I have yet to see a neuro for anything. Thank you for your time.
George
I had recently went on a trip to Hawaii in late May and returned early April. When I came back along with the eye problems came these ungodly ear infections that would no cease. It started in my left ear. Basically to sum it up, I ended up with about 4-5 ear infections over the course of a little less then 2 months I think. I was on about 3 different medications total. Well neeedless to say they went way.
I finally thought that I was going to feel fine after all that when I started having stomach problems which followed almost a week to three weeks after the ear infections. I am sorry if I am a little graphic with the description but i'll try and narrow it down. Basically everytime I ate something I would go to the bathroom within the next 20 minutes, and it was green. This probably took place for i'd say a good week and a half before it haulted and seemed to almost rearrange my bowel habbits. For some reason I am pretty regular now unlike before when sometimes I would go almost a week without a bowel movement. But that seems fine now and has went away.
I'd say the last week of stomach problems I had gone to work with my girlfriends father who installs carpet for a living. I did some heavy lifting but nothing that seemed out of the ordinary. But within a week or so after that day I developed this weird feeling in my side of my stomach and what seemed to be my hip bone. It wasn't extremely painful but I did have a dull ache to it. So after awhile of it being a nuissance I went to the ER and they did an ultra sound of my stomach and found nothing and brushed it off as just a pain. So I accepted that and made a follow up with my general practioner. He also found nothing and sent me on my way.
Well this is what brings me to this site today. About 2-3 months ago a little after my doctor's appointment I developed a twitch in my right leg. It lasted i'd say almost 2-3 days of it being a constant twitch. I didn't think anything of it. But About almost 1 1/2 months which brings us to about 1 week before the present. I have been getting twitches all over. Mostly in my lower torso. But I get them in my arms near the elbow, both my thighs, my glutes and buttocks, my calfs and feet, and occasionally my head. I have noticed that both my thigh muscles are extremely tight. They seem no longer sore but very tight and stiff as well as the side of my calf muscles. I tried to play basketball with my cousin about a week ago and I was able to job and bear weight on my legs but I noticed that I could very easily feel the stifness in both my legs. It didn't hurt all that much but did feel uncomfortable even though I tried not to do anything strenuous when I first noticed it.
Well I had went to the doctors with this and he had brushed it off as being an onset of anxiety and prescribed me with Amitriptyline and sent me on my way. He did a full blood work up on me when all my systems started and said that there was nothing wrong with me. Just to let you know I've had quite a big of onset panic attacks over the prolonged time from when I came back from my trip. Basically what I am asking is can my symptoms be the cause of ALS or could it just be anxiety? I am a worry wort and freak out about a lot of things. Also I have borderline high blood pressure and I was an avid person who worked about and was generally healthy when I worked at the gym. I had gained about 25 pounds since and just started to try and get back into the workout groove. Sorry for such a long post but hopefully you can help me out and maybe clear up some questions and concerns I have about this being possible ALS. I have yet to see a neuro for anything. Thank you for your time.
George
Hello- I just had to send you this page from thr BFS web site. Unfortunatly it wont fit in one posting so I am going to break it up and post it in incriments....................
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BFS Q's & A's by long time BFS'er and independent researcher, Arron Johnson:
How does BFS usually start?
It can happen at any age, with any gender and at any time. It usually starts with a small twitch in a finger or an eye lid or in the calf of the leg and just won't go away. This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of “continual twitches are an indicator of a motor neuron disease such as ALS“, which is SO un-true and taken out of context.
How long does BFS last?
In most cases, it is quite a while. such as years. A few people seem to recover fully but most have varying symptoms that come and go for years depending on stress levels, illnesses, not enough sleep and so on.
Are there any treatments for BFS?
No, not really any good one's and so far. It doesn't look like much is in sight either. After all, it is a benign condition so researchers trying to develop treatments and cures for much worse things in life aren't putting much time, money and energy into a benign condition, and rightly so. The thing with BFS is that "usually" it starts-out slow, with one little twitch and then progresses into a frenzy of twitches all over your whole body and it will usually stay that way for a while, then all on it's own (especially if stress and anxiety is reduced) they will subside to only a few a day. This is the "norm" but not the absolute rule. With that, people have tried remedies such as copper, magnesium, multivitamins, more sleep, herbal supplements, stress and anxiety reducers (be them meditating or medications) exercise and a whole slew of other home treatments. There is a very big "placebo effect" with BFS being that it is directly collated with stress and anxiety, so when a person starts taking what they believe will be a "cure", their twitches will usually subside. This also happens if nothing is taken at all and BFS sort of runs it's course. Many people that have taken remedies, have later posted on web sites stating that indeed at first, the twitches had subsided, but came back again after all. This again is consistent with taking nothing, hence the placebo effect. With BFS though, it is a matter of what works for you and staying calm and keeping stress and anxiety at a minimum, because although BFS may not be "caused" by stress or anxiety, it most certainly does feed off of it, and symptoms will go up and down according to mood, stress, anxiety level, tiredness, illness and so on. The only thing that does seem to help are medications to alleviate stress and anxiety, which in turn help some of the symptoms subside. These can be temporary meds that are used "as needed" which are called "Benzo's". Valium, Ativan, Buspar, Xanax and Klonopin are a few brand names of benzo's and they work very well at reducing severe stress and anxiety and helping you to relax and sleep at night as well. There are also long term meds for this that are called SSRI's, such as Paxil, Prozac, Celexia and so on. These commonly take 2 to 4 weeks before they get into your system and start doing what they are supposed to do. The big problem with SSRI's, (even though they work quite well once they get into your system and start working), is that the first symptoms and side effects during the first couple of weeks can be really harsh. These side effects include severe anxiety, twitching, body jolts, sleeplessness, hot flashes, tingling from hell, slurred speech, clumsiness, being in a zombie-like state and many other really undesirable feelings. Getting rid of symptoms like that is the very reason you are taking the meds in the first place. Just remember, these meds do help many people out once they get past the first stages and remember, with SSRI's, the first couple of weeks of taking it, it all gets much worse before it gets better.
What causes BFS?
There have been some theories that BFS starts after an illness such as a bout of the flu or a bad sinus infection, which would make some think it has to do with some sort of autoimmune response or post viral response. Some neurologists have started that BFS is caused by irritated nerve endings or irritated muscle linings. There have been theories that it is a type of Herpes virus that has somehow gotten into the nerve conductors that control muscles, these too are wishy washy so far with no real hard evidence as of yet. There are also the theories that stress and anxiety cause BFS, but as with all theories that point in one direction, there are just as many other cases that point away from it, so as of right now, it all seems pretty inconclusive. Stress and anxiety do play a big role in BFS and will make symptoms worse when stress and anxiety levels are high, such as right after someone reads that twitches are an indicator of ALS. That usually put the person's anxiety and stress level off the scales which in turn, makes the symptoms explode to every part of the body, which is turn, makes the person even more sure they have ALS, which without weakness or loss of muscle control is highly unlikely. It can be a vicious cycle that is very hard to get out of once you get caught in it.
What are the symptoms of BFS?
BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non-visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka “Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.
to be continued
--------------------------------------------------------------------------------
BFS Q's & A's by long time BFS'er and independent researcher, Arron Johnson:
How does BFS usually start?
It can happen at any age, with any gender and at any time. It usually starts with a small twitch in a finger or an eye lid or in the calf of the leg and just won't go away. This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of “continual twitches are an indicator of a motor neuron disease such as ALS“, which is SO un-true and taken out of context.
How long does BFS last?
In most cases, it is quite a while. such as years. A few people seem to recover fully but most have varying symptoms that come and go for years depending on stress levels, illnesses, not enough sleep and so on.
Are there any treatments for BFS?
No, not really any good one's and so far. It doesn't look like much is in sight either. After all, it is a benign condition so researchers trying to develop treatments and cures for much worse things in life aren't putting much time, money and energy into a benign condition, and rightly so. The thing with BFS is that "usually" it starts-out slow, with one little twitch and then progresses into a frenzy of twitches all over your whole body and it will usually stay that way for a while, then all on it's own (especially if stress and anxiety is reduced) they will subside to only a few a day. This is the "norm" but not the absolute rule. With that, people have tried remedies such as copper, magnesium, multivitamins, more sleep, herbal supplements, stress and anxiety reducers (be them meditating or medications) exercise and a whole slew of other home treatments. There is a very big "placebo effect" with BFS being that it is directly collated with stress and anxiety, so when a person starts taking what they believe will be a "cure", their twitches will usually subside. This also happens if nothing is taken at all and BFS sort of runs it's course. Many people that have taken remedies, have later posted on web sites stating that indeed at first, the twitches had subsided, but came back again after all. This again is consistent with taking nothing, hence the placebo effect. With BFS though, it is a matter of what works for you and staying calm and keeping stress and anxiety at a minimum, because although BFS may not be "caused" by stress or anxiety, it most certainly does feed off of it, and symptoms will go up and down according to mood, stress, anxiety level, tiredness, illness and so on. The only thing that does seem to help are medications to alleviate stress and anxiety, which in turn help some of the symptoms subside. These can be temporary meds that are used "as needed" which are called "Benzo's". Valium, Ativan, Buspar, Xanax and Klonopin are a few brand names of benzo's and they work very well at reducing severe stress and anxiety and helping you to relax and sleep at night as well. There are also long term meds for this that are called SSRI's, such as Paxil, Prozac, Celexia and so on. These commonly take 2 to 4 weeks before they get into your system and start doing what they are supposed to do. The big problem with SSRI's, (even though they work quite well once they get into your system and start working), is that the first symptoms and side effects during the first couple of weeks can be really harsh. These side effects include severe anxiety, twitching, body jolts, sleeplessness, hot flashes, tingling from hell, slurred speech, clumsiness, being in a zombie-like state and many other really undesirable feelings. Getting rid of symptoms like that is the very reason you are taking the meds in the first place. Just remember, these meds do help many people out once they get past the first stages and remember, with SSRI's, the first couple of weeks of taking it, it all gets much worse before it gets better.
What causes BFS?
There have been some theories that BFS starts after an illness such as a bout of the flu or a bad sinus infection, which would make some think it has to do with some sort of autoimmune response or post viral response. Some neurologists have started that BFS is caused by irritated nerve endings or irritated muscle linings. There have been theories that it is a type of Herpes virus that has somehow gotten into the nerve conductors that control muscles, these too are wishy washy so far with no real hard evidence as of yet. There are also the theories that stress and anxiety cause BFS, but as with all theories that point in one direction, there are just as many other cases that point away from it, so as of right now, it all seems pretty inconclusive. Stress and anxiety do play a big role in BFS and will make symptoms worse when stress and anxiety levels are high, such as right after someone reads that twitches are an indicator of ALS. That usually put the person's anxiety and stress level off the scales which in turn, makes the symptoms explode to every part of the body, which is turn, makes the person even more sure they have ALS, which without weakness or loss of muscle control is highly unlikely. It can be a vicious cycle that is very hard to get out of once you get caught in it.
What are the symptoms of BFS?
BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non-visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka “Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.
to be continued
Hello,
Thank you for your post...It was very informative and reassuring to some extent. You seem very well knowledged about this whole situation. I just had a few other questions that maybe you could answer for me. You described in your post that you don't get faiculations until after there is signifigant muscle damage and that it is your muscle's last hurrah before everything is done. By this, do you mean that I wouldn't be able to use that specific muscle and that I would notice some dips or changes in my muscle? I have definately heard of BFS it just seems rather odd that I would just all of a sudden develop something like this. I mean for years, probably a good 8 to say i've had some sort of anxiety. For some odd reason it just seemed to kick up a little more during my sickness from when I got home from my vacation. Basically what my other question is. Why would it all of a sudden affect me now, and not before? I've definately had some prolonged anxiety before and never anything that involved twitching. Also my doctor put me on an anti-depressant for probably a little less then 3 weeks now. It is Amitriptyline, and I started on a very low dose (10MG), and he increased it to (25MG) just now. So i've been taking it pretty faithfully since about 2 weeks ago when I started noticing the twitching more. So can you actually twitch when your on this. I mean it seems like even when i'm not stressed out or thinking of anything bad, I twitch. I am definately rather new to all of this. Also I am very unaware of how this whole thing works. It just seems akward that you start to develop twitching because of stress, but what is more akward is that when you aren't in a stressful or anxiety related mood you twitch anyway. It's like if you twitch because of stress. Why doesn't it seem to stop when your not stressed or anxious about anything? Well thank you for your post. It definatly has been helpful to me and has calmed me down to some extent. Sorry if this post seems rather repetative. I'm just curious about how it works. I did visit that site aboutbfs.com and read some things on it. Oh, also I forgot to ask. When they mention atrophying related to ALS. Which from what my reading has explained to me that it is the losing of muscle in the area that is affected. When exactly does that occur? Also, how would you know? Well sorry if I seem like a pain in the ***...Haha. It is good to talk to someone who is kind of going through what you are. Sometimes it feels as though nobody understands exactly what i'm going through. I've tried explaining it to my mother but she thinks that I can just turn it off like it's a switch...Haha. Well I have to run. Thank you for answering my first post. Have a nice day.
George
Thank you for your post...It was very informative and reassuring to some extent. You seem very well knowledged about this whole situation. I just had a few other questions that maybe you could answer for me. You described in your post that you don't get faiculations until after there is signifigant muscle damage and that it is your muscle's last hurrah before everything is done. By this, do you mean that I wouldn't be able to use that specific muscle and that I would notice some dips or changes in my muscle? I have definately heard of BFS it just seems rather odd that I would just all of a sudden develop something like this. I mean for years, probably a good 8 to say i've had some sort of anxiety. For some odd reason it just seemed to kick up a little more during my sickness from when I got home from my vacation. Basically what my other question is. Why would it all of a sudden affect me now, and not before? I've definately had some prolonged anxiety before and never anything that involved twitching. Also my doctor put me on an anti-depressant for probably a little less then 3 weeks now. It is Amitriptyline, and I started on a very low dose (10MG), and he increased it to (25MG) just now. So i've been taking it pretty faithfully since about 2 weeks ago when I started noticing the twitching more. So can you actually twitch when your on this. I mean it seems like even when i'm not stressed out or thinking of anything bad, I twitch. I am definately rather new to all of this. Also I am very unaware of how this whole thing works. It just seems akward that you start to develop twitching because of stress, but what is more akward is that when you aren't in a stressful or anxiety related mood you twitch anyway. It's like if you twitch because of stress. Why doesn't it seem to stop when your not stressed or anxious about anything? Well thank you for your post. It definatly has been helpful to me and has calmed me down to some extent. Sorry if this post seems rather repetative. I'm just curious about how it works. I did visit that site aboutbfs.com and read some things on it. Oh, also I forgot to ask. When they mention atrophying related to ALS. Which from what my reading has explained to me that it is the losing of muscle in the area that is affected. When exactly does that occur? Also, how would you know? Well sorry if I seem like a pain in the ***...Haha. It is good to talk to someone who is kind of going through what you are. Sometimes it feels as though nobody understands exactly what i'm going through. I've tried explaining it to my mother but she thinks that I can just turn it off like it's a switch...Haha. Well I have to run. Thank you for answering my first post. Have a nice day.
George
First you have floaters- not that uncommon (my 6 year old has them and my 20 year old sister got them when she was pregnant nd they never went away)- your dr. should have told you that they are most just annoying , not dangerous......second.....it sounds as though you may have pressurized your ears while flying........you probably had some fluid that then decided to block up your eustation (spelling??) tube- hence the infection...then lots of meds....i'm assuming some anti-biotics were in the cocktail? well...guess what? sounds like you destroyed all your beneficial gut bacteria AND stressed out your liver (most medicine does that to some extent,,,,but 3 meds and if you drink or your diet isn't so great puts more stress).as far as your twitches....from what i have read (way to much by the way) fasiculations (twitches) don't happen with a.l.s. until after there is significant damage to your nerves....it's you muscles last hurrah before the nerves are totally fried. AnD if you yourself reread you post the thread of events is easy to follow and until one month ago you were just dealing with ear, nose, throat **** with a little stomach discomfort from all the meds.......google intestinal flora and a ton of yogurt based web sites pop up at tell you how to "get it back" after medication use.....also if you want google milk thistle you'll see that it restores the liver. now the twitching: whew- to some extent every one on this site and otheres who have googled "ywitching" fear the worst BUT there is a great place to get the facts......aboutbfs.com - in the frequently asked questions section, you may come to realize that anxiety can help you to create symptoms- no really! i've done it for years despite knowing that there is a one in A MILLION CHANCE that i would be cursed with some thing horrific like a.l.s.- see because i can get super anxious it is some how easier to take the odds ( like i said they are huge) and make sure i am part of the one in a million. it is sick and self destructive...but since your new at this whole thing let me give you some advice......stop now. you are o.k.- enjoy your life. read the bfs (which means -Benign Fasciculation Syndrome- which means ..you twitch from stress and i twitch from nerves and we both need to let it all go) if you need reassuring but stay off these kind of sites. your mind can wander...next thing you know your hooked.
please take care.
good luck
please take care.
good luck
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