mgardner87
Well-known member
I'd just like to say a big thank you to everyone who has taken time out to answer my postings this year (I miss your postings, Jenn - please come back soon) and I'd like to wish you all a very Merry Christmas and a very Happy New Year - I'm going to take a few days off from my Mac (yes - another darned Mac user) unless I have another finger/hand/arm emergency that I need reassurance on (sorry, Basso).
In your replies, you have all helped me tremendously through one of the most difficult times in my life with having had BFS for 11 months now. It has been a rough ride for me - never in my life have I cried so much - in fear of what was happening to my body. Having suffered from depression for most of my life, I haven't had a lot of laughter or smiles in the past 11 months of dealing with this but this forum has brought me a lot of hope and reassurance. It has been my saving grace at times when I thought I was literally going crazy. This is a bit of a long read but hopefully, it may bring a few laughs and some reassurance to anyone out there who may think they are on the verge of insanity. I see a lot of fear and anxiety in newcomers to the forum and I perfectly understand why. Heck, I <B>still</B> have a lot of fear and anxiety myself!
I went through a period of absolute HELL from October 2005 to January of this year (little did I know what was yet to come with BFS about to enter my life). I was under such incredible stress and suffering from such severe anxiety (I'll leave the details of what was happening in my life at that time out to keep this shorter) that this is where the BFS all started according to the neurologists I've seen this year. I had almost quit smoking by tapering myself down to 5 cigarettes a day from over 30 a day (I was a heavy smoker and it took me 4 difficult months to do this). I remember laying in bed one night in early February when a spot on my right forearm began twitching and I thought to myself "what the heck is that all about?" Two nights later, I was laying on the couch watching a hockey game when I happened to look down at my right foot which was moving in a strange pattern - little ripples on the bottom of my foot. I became obsessed with my foot, staring at it and analyzing it for 24 hours straight until the following night when my big toe started moving backward and forward along with the rippling motion in my foot. I jumped up in absolute fear and yelled to my wife "Hun, come here - there's something wrong with me!" A few nights later, my left foot started to do the exact same thing and I couldn't stop pacing the floor - I was terrified. My whole life went into overdrive - I found myself rushing to do everything. Running. Fearing. Analyzing all of my body parts in the mirror. And out came the cigarettes again.
As time went on, I lost a total of 28 pounds from the sheer anxiety of all of this (I've gained about 7 back so far, mind you - I did have a bit of a spare tire that needed patching so I'm at a fairly decent weight right now for my height). I had to start sleeping in a separate bed from my wife because I was sweating so profusely - I would wake up drenched in the mornings and I was running on maybe 3 to 4 hours of sleep a night if I was lucky. I was so anxious and tense that during the month of April, I was walking 70 to 100 blocks a day as a coping strategy. My calves were twitching along with my feet and everything seemed to be moving from the bottom of my body upward with my BFS experience. My thighs twitched. My ankles, knees and even my hips got very sore at times. My rear end even twitched! With the BFS moving up and up towards my chest, I began twitching in my upper arms and forearms. Then my neck and throat started. Then the sore jaws came (I actually broke a tooth from clenching my teeth so hard). The sore neck came. My face was twitching - in the cheeks, lips, and eyes. At one point, my eyes wanted to close half shut on me from the constant twitching (thankfully, that stopped after about 6 to 8 weeks). I remember looking in the mirror one day noticing that my teeth were chattering! My vision was going so blurry earlier in the year that I thought I was going to go blind. My temples, my forehead, my scalp twitched - when I smiled in front of the mirror while analyzing my face, the muscles in my face trembled. You name the place on the face and head and I'll bet I've probably twitched there. I've spent more time in the bathroom (in front of the mirror) than in any other room in the house this year.
I'll never forget the first BFS-related myoclonic jerk I got. I was almost asleep and my left arm bounced upward with such force that it moved the whole bed and my first reaction was "hmmmm... I'd better get up and look for my arm so I don't forget about it in the morning." I got lots more "jerks" after that - scary ones that I've never quite experienced the velocity of before. Around that same time, I remember sitting out on the back patio trying to relax one morning when the left side of my chest started to fasciculate violently - it didn't stop for the entire day (or night). The next day, the left side of my cheek did the exact same thing - I thought part of my cheek was going to come off of my face. I was terrified of what the neighbors would think if they saw me (what the heck is HIS problem?). And I had still not had an EMG test done or a BFS diagnosis so I had no idea what was happening to me. I was desperate for an answer. I was a mess.
I had an EMG test done in early July which set my mind at ease a little but that only lasted for a few weeks - the diagnosis was - you guessed it - BFS. There was still that worry there that I see in so many other people on the forum. The movement disorder specialist I saw a few weeks later assured me that I did not have Dystonia or Tardive Dyskenisia. Unfortunately, things actually seemed to <B>worsen</B> in July and August. My hands and fingers took on a mind of their own. My wife and I were listening to a CD one night when all of a sudden, my right forefinger started to move back and forth all on its own and I absolutely freaked - I jumped up and went into a state of sheer panic - insisting to see a doctor immediately. From there, my fingers started to twitch and move, my left forearm went into overdrive. My hands went numb at times. I got a tremor in my hands that continues to this day. My shoulders twitched. My back and chest twitched. And then the BFS "weakness" and "fatigue" set in which put a damper on my walking/coping strategy. For four days straight at the beginning of October, my number-two turned completely lime-green. Now what the heck was THAT all about? If that isn't enough to freak someone out, I don't know what is.
This year, I've seen 15 different doctors and specialists - 2 neurologists, a movement disorder specialist, a medication specialist, an endocrinologist, a rheumatologist, an infectious diseases specialist, a dermatologist, an eye specialist and many more. I've had <B>dozens</B> of tubes of blood taken out of me (I'll bet you I've had at least 40 tubes of blood taken out of me which may be a conservative estimate). I've had one CT Scan and three MRI's done and the one thing I haven't mentioned on this forum until now is that all three MRI's discovered a benign pituitary tumor (a macroadenoma) which I hope to have removed at the end of January. That's the only thing that has turned up out of any of the tests and doctor's visits and I sometimes still wonder if some of my problems aren't related to this tumor (my neurosurgeon and the endocrinologist both say NO, it's DEFINITELY not).
It's been a hellish year. You'd think that this BFS would give you a break every now and again but not so. My twitches roam around all over the place (aka: "Widespread [Bodywide] Twitching"). These past few weeks, my fingers have been moving around and twitching and being pests - my right pinky finger will bounce around at its own will and I feel like shooting it with a .22. My left hand goes numb the odd time - my left thumb feels weird (almost like it gets "stuck" every now and again) and it seems to be going the route of my right pinky. My hands feel clumsy and it's been so bloody cold here in Vancouver that I know for sure that the cold weather is affecting my BFS. My wrists get sore and my fingers feel like they will break in half sometimes if I press too hard on something. Today, my left lower eyelid twitches every 10 minutes. The upper left part of my lip twitches when it feels like it. My chin twitches when it feels like it. My feet and calves go 24/7 and my left forearm acts up every half hour or so, working its way towards 24/7. My arms are shaky. My hands are shaky. My left shoulder is sore and it seems to affect my neck sometimes. WHEN does it ever end? No wonder we get anxious with BFS. And I know that tomorrow, it will be a similar story - just in different places, no doubt. I'm only slowly starting to get used to this but for some reason, it's taking me a lot of time. But today, I am smiling.
Well, it's time to go take a Klonopin and have a smoke (I'm at about 15 a day - smokes, not Klonopin) so once again, thanks to everyone for your help and have a wonderful Christmas season. Here's hoping for a better year in 2007 and I'll tell you one thing for sure - aside from this forum, my faith in God has kept me going, one day at a time, for almost an entire year.
God Bless You All, Mark
PS: I just sneezed and now, both my eyes are twitching - seriously
In your replies, you have all helped me tremendously through one of the most difficult times in my life with having had BFS for 11 months now. It has been a rough ride for me - never in my life have I cried so much - in fear of what was happening to my body. Having suffered from depression for most of my life, I haven't had a lot of laughter or smiles in the past 11 months of dealing with this but this forum has brought me a lot of hope and reassurance. It has been my saving grace at times when I thought I was literally going crazy. This is a bit of a long read but hopefully, it may bring a few laughs and some reassurance to anyone out there who may think they are on the verge of insanity. I see a lot of fear and anxiety in newcomers to the forum and I perfectly understand why. Heck, I <B>still</B> have a lot of fear and anxiety myself!
I went through a period of absolute HELL from October 2005 to January of this year (little did I know what was yet to come with BFS about to enter my life). I was under such incredible stress and suffering from such severe anxiety (I'll leave the details of what was happening in my life at that time out to keep this shorter) that this is where the BFS all started according to the neurologists I've seen this year. I had almost quit smoking by tapering myself down to 5 cigarettes a day from over 30 a day (I was a heavy smoker and it took me 4 difficult months to do this). I remember laying in bed one night in early February when a spot on my right forearm began twitching and I thought to myself "what the heck is that all about?" Two nights later, I was laying on the couch watching a hockey game when I happened to look down at my right foot which was moving in a strange pattern - little ripples on the bottom of my foot. I became obsessed with my foot, staring at it and analyzing it for 24 hours straight until the following night when my big toe started moving backward and forward along with the rippling motion in my foot. I jumped up in absolute fear and yelled to my wife "Hun, come here - there's something wrong with me!" A few nights later, my left foot started to do the exact same thing and I couldn't stop pacing the floor - I was terrified. My whole life went into overdrive - I found myself rushing to do everything. Running. Fearing. Analyzing all of my body parts in the mirror. And out came the cigarettes again.
As time went on, I lost a total of 28 pounds from the sheer anxiety of all of this (I've gained about 7 back so far, mind you - I did have a bit of a spare tire that needed patching so I'm at a fairly decent weight right now for my height). I had to start sleeping in a separate bed from my wife because I was sweating so profusely - I would wake up drenched in the mornings and I was running on maybe 3 to 4 hours of sleep a night if I was lucky. I was so anxious and tense that during the month of April, I was walking 70 to 100 blocks a day as a coping strategy. My calves were twitching along with my feet and everything seemed to be moving from the bottom of my body upward with my BFS experience. My thighs twitched. My ankles, knees and even my hips got very sore at times. My rear end even twitched! With the BFS moving up and up towards my chest, I began twitching in my upper arms and forearms. Then my neck and throat started. Then the sore jaws came (I actually broke a tooth from clenching my teeth so hard). The sore neck came. My face was twitching - in the cheeks, lips, and eyes. At one point, my eyes wanted to close half shut on me from the constant twitching (thankfully, that stopped after about 6 to 8 weeks). I remember looking in the mirror one day noticing that my teeth were chattering! My vision was going so blurry earlier in the year that I thought I was going to go blind. My temples, my forehead, my scalp twitched - when I smiled in front of the mirror while analyzing my face, the muscles in my face trembled. You name the place on the face and head and I'll bet I've probably twitched there. I've spent more time in the bathroom (in front of the mirror) than in any other room in the house this year.
I'll never forget the first BFS-related myoclonic jerk I got. I was almost asleep and my left arm bounced upward with such force that it moved the whole bed and my first reaction was "hmmmm... I'd better get up and look for my arm so I don't forget about it in the morning." I got lots more "jerks" after that - scary ones that I've never quite experienced the velocity of before. Around that same time, I remember sitting out on the back patio trying to relax one morning when the left side of my chest started to fasciculate violently - it didn't stop for the entire day (or night). The next day, the left side of my cheek did the exact same thing - I thought part of my cheek was going to come off of my face. I was terrified of what the neighbors would think if they saw me (what the heck is HIS problem?). And I had still not had an EMG test done or a BFS diagnosis so I had no idea what was happening to me. I was desperate for an answer. I was a mess.
I had an EMG test done in early July which set my mind at ease a little but that only lasted for a few weeks - the diagnosis was - you guessed it - BFS. There was still that worry there that I see in so many other people on the forum. The movement disorder specialist I saw a few weeks later assured me that I did not have Dystonia or Tardive Dyskenisia. Unfortunately, things actually seemed to <B>worsen</B> in July and August. My hands and fingers took on a mind of their own. My wife and I were listening to a CD one night when all of a sudden, my right forefinger started to move back and forth all on its own and I absolutely freaked - I jumped up and went into a state of sheer panic - insisting to see a doctor immediately. From there, my fingers started to twitch and move, my left forearm went into overdrive. My hands went numb at times. I got a tremor in my hands that continues to this day. My shoulders twitched. My back and chest twitched. And then the BFS "weakness" and "fatigue" set in which put a damper on my walking/coping strategy. For four days straight at the beginning of October, my number-two turned completely lime-green. Now what the heck was THAT all about? If that isn't enough to freak someone out, I don't know what is.
This year, I've seen 15 different doctors and specialists - 2 neurologists, a movement disorder specialist, a medication specialist, an endocrinologist, a rheumatologist, an infectious diseases specialist, a dermatologist, an eye specialist and many more. I've had <B>dozens</B> of tubes of blood taken out of me (I'll bet you I've had at least 40 tubes of blood taken out of me which may be a conservative estimate). I've had one CT Scan and three MRI's done and the one thing I haven't mentioned on this forum until now is that all three MRI's discovered a benign pituitary tumor (a macroadenoma) which I hope to have removed at the end of January. That's the only thing that has turned up out of any of the tests and doctor's visits and I sometimes still wonder if some of my problems aren't related to this tumor (my neurosurgeon and the endocrinologist both say NO, it's DEFINITELY not).
It's been a hellish year. You'd think that this BFS would give you a break every now and again but not so. My twitches roam around all over the place (aka: "Widespread [Bodywide] Twitching"). These past few weeks, my fingers have been moving around and twitching and being pests - my right pinky finger will bounce around at its own will and I feel like shooting it with a .22. My left hand goes numb the odd time - my left thumb feels weird (almost like it gets "stuck" every now and again) and it seems to be going the route of my right pinky. My hands feel clumsy and it's been so bloody cold here in Vancouver that I know for sure that the cold weather is affecting my BFS. My wrists get sore and my fingers feel like they will break in half sometimes if I press too hard on something. Today, my left lower eyelid twitches every 10 minutes. The upper left part of my lip twitches when it feels like it. My chin twitches when it feels like it. My feet and calves go 24/7 and my left forearm acts up every half hour or so, working its way towards 24/7. My arms are shaky. My hands are shaky. My left shoulder is sore and it seems to affect my neck sometimes. WHEN does it ever end? No wonder we get anxious with BFS. And I know that tomorrow, it will be a similar story - just in different places, no doubt. I'm only slowly starting to get used to this but for some reason, it's taking me a lot of time. But today, I am smiling.
Well, it's time to go take a Klonopin and have a smoke (I'm at about 15 a day - smokes, not Klonopin) so once again, thanks to everyone for your help and have a wonderful Christmas season. Here's hoping for a better year in 2007 and I'll tell you one thing for sure - aside from this forum, my faith in God has kept me going, one day at a time, for almost an entire year.
God Bless You All, Mark
PS: I just sneezed and now, both my eyes are twitching - seriously