yoursnextdoor
Member
Hello at all !
I think maybe some of you remeber me. I posted the first time in Autumn last year. I have tha URGANT REQUEST that you read my hole posting.
It is not full of freaking out passages or anxiety attacks or somethinge like this. It is long but PLEASE read it and feel free to respond if you have any idea etc.
I am a 20 yrs. old German and now still twichting for nearly 12 month.
InOctober 2005, I developped other symptoms but after a lot of checksn exams and tests in clinics I got the result "BFS". ( Tests: Exams, EMGs, ENG; VGKC / VGPC - normal, bloodtests normal).
And now here I am again, still convinced to have an LMND , without any anxiety, panic or something else.
I just see the facts of the symptoms that I have and that have PROGRESSED in the last months.
In the following lines, I will give you a list of all of my symptoms and maybe someone is able to say s.th. to this or give a comment.
But please still read it and notice that I just write down the facts, without any ALS-Panic or such a kind of "Psycho-Feeling"....
- Bodywide widespread twichting : The most valued symptom. MOst of them are very fast, single twitches , randomized.
One moment in the hand, next moment in the leg etc.
But I have not only one "place" in one muscle, there are different places in on muscle group, like Biceps 1, Biceps2 , Triceps2, Triceps 2 etc.
Very often when I am in special postions and there is pressure on the limb or muscle it twitches etc.
- Sometimes "Hotspots". Stay in one place for one day, like shoulder, biceps or tigh / knee. Typical "big ones" that you can easily see and feel.
- Some Feelings like "Explosions" , very high Frequency, like Popcorn is made under your skin. Have this especially in my right foot and right calve - frontside. But there are other places like left calf or foot.
So far ,nothing to "freak" out and absolutely normal for BFS.
But now my other Symptoms:
-Progressing weakness in the right Forearm in Combination with myoclonic jerks in now ALL of my fingers .
This started very slowly in my right Ringfinger. He moves from one side to the other , very lightly in October 05.
Now: If I try to do very slow movements with my Fingers, it is nearly impossible because they jump from one side to the other.
Especially the Middlefinger and the Ringfinger are affected, but more and more the Indexfinder, Thumb and the Pinkie start this, too.
For an example: Sometimes when my Indexfinger and my Middlefinger lying on the computer-mice and I try to do very slow movements with the PC-mice, my middlefinger is twichting from the left to the right.
This effect of the myoclonics ( i think these symptoms are myoclonics ??) is much more weaker when the fingers are cold. The heaviest effect is when the fingers are warm. It is nearly impossible to stretch all of my fingers without the movement of the ring finger or light movements of others.
Another point is the weakness: Now I am typing here and it is not easy. My fingers feel grave and especially my thumb muscle feels tired and weak. This ist ususally more a problem in the evening.
I have to add the there is the "feeling" of atrophy, too. If I give tension to my muscles, I see and feel differences between the left and the right limb. It is like if there are no more muscle-fibres in a lot of places at the right side.
This fit in with my problems with my Forearm. I know that there are the long muscles of the fingers that stretch them are beginning near the ellbow. The "flexors". I have problems with the power exact in this place.
Furthermore, my whole arm and my whole hand are not able to do some movements without a "gearwheel" effect : It is hardly to describe. I can´t do a very slow movement in a fluent way, it is in a lot of cases like the gearwheel.
The Jerks of the fingers begin in the left hand, too. The left small finger starts to move from one side to the other.
Similar effect at my right foot / calve : I have this "gearwheel" problem with my right foot and there is also the problem with Fascics and little crampis in the kneehole at the beginning of the calve-muscle.
Especially after Running or Exercises. There is definetly something wrong.
Furthermore I feel really often tired, despite the fact that I sleep
7-8 h.
If I try to do fitness-workout with weights, it is a horrible trip because quite early, my underarm not have the ability to do other excercices very long because the muscle not contracts, it only twitches later in the workout.
In general: My muscles twitch horribly after a workout, if I have to use them . More than it should be. Like theres no more energie in the muscle to do any contraction correctly and that mabe fits together wth the hypotesis of ALS and metabolic problems in the cells.
My Conclusion from ALL what I know and when I compare it to my symptoms:
I MUST have SOMETHING in my body.
A lot of dieseases are defintely not possible because they ruled out by a lot of tests.
If I keep everything in perspective I have to think about an LMND.
Why ?
It is typicall that in the early stages, at first ONE type of muscle fibres, Type 1 or Typ 2, get lost because of the denervation that usually starts in a Motonreuon for ONE muscle group ( Type 1 or 2 ) .
Because of this, the muscle has to get "repaired" by another, intact Motoneurone. However, this Neurone innervates Type 2 muscle fibres, so the Typ 1 muscle fibre become a typ 2 muscle fibre.
Untill the other Motoneurones also get "killed" and the whole muscle loses his innervation.
So lets look back to my symptoms: I can do every movement and everything, but some movements become more and more difficult and the muscle/ finger / arm "trembles" . The endurance gets slightly worse.
So my theory: A lot of muscle fibres of one type are destroyed but the Motoneurones of other fibres are not "affected".
This would fit together with my observation, that there are some muscle-mass left in different little places and strings on the right side.
Besides, I have widespread twichting in these limbs and what I know is that this is typicall for LMND. Twitches that vary in places in one muscle group are "bad" .
Another fact : I am very thin, only 59kg with 1,74m( 50-55 kg between 15 and 18!!) . I do sports, I had a lot of stress etc.
I am afraid that my body has said "its enough" and now...because I ve read about the coherences of thin people with less body fat and sports acitivities ans ALS....
Ok..now I ve written a lot and I donßt know If anybody here read evereything.
I have an appointment with a new Neuologist three weeks further.
This shall be my LAST Neuro Visit and NOW I will get measured MY PLACES where I have the problems.
I had a lot of EMGs in the past. I had EMGs of my right tigh, right lower calf, left tigh, right thumbmuscle between thumb and indexfinger, left shoulder muscle.
Everything was clear.
But I had never an EMG of my accurate problem places : Forearm and Head of the right calvemuscle.
I know that a lot of you know a lot about EMGs. I don´t know what to believe.
Not all of my Nerve roots are measured, so how will somebody now that theres nothing when some nerve roots and the Motoneurones there are not measured?
I don´t know what to think.
I know that somethings going wrong with my body and PLEASE don´t tell me something abput my Psych etc.
Like I said: I listed my Symptoms and my thoughts as clear and businesslike as possible. Theres nothing that I registered because of an anxiety attack or something else...just facts.
I am thankful for any respond !
But I don#t know whats going on! Typical Symptoms of BFS, however a lot more...nothing bulbar at all, no weight loss and every movements is possible but still progreesive neurologcal symptoms....a riddle...
Greetings from Germany
Simon
PS: I apologize for my typing mistakes and my bad englsh but its too late for this ( 1h in Emilyomousey ) and actually I should be in a disco instead searching and reading about als / bfs / mnd and having all those symptoms with my 20yrs....
I think maybe some of you remeber me. I posted the first time in Autumn last year. I have tha URGANT REQUEST that you read my hole posting.
It is not full of freaking out passages or anxiety attacks or somethinge like this. It is long but PLEASE read it and feel free to respond if you have any idea etc.
I am a 20 yrs. old German and now still twichting for nearly 12 month.
InOctober 2005, I developped other symptoms but after a lot of checksn exams and tests in clinics I got the result "BFS". ( Tests: Exams, EMGs, ENG; VGKC / VGPC - normal, bloodtests normal).
And now here I am again, still convinced to have an LMND , without any anxiety, panic or something else.
I just see the facts of the symptoms that I have and that have PROGRESSED in the last months.
In the following lines, I will give you a list of all of my symptoms and maybe someone is able to say s.th. to this or give a comment.
But please still read it and notice that I just write down the facts, without any ALS-Panic or such a kind of "Psycho-Feeling"....
- Bodywide widespread twichting : The most valued symptom. MOst of them are very fast, single twitches , randomized.
One moment in the hand, next moment in the leg etc.
But I have not only one "place" in one muscle, there are different places in on muscle group, like Biceps 1, Biceps2 , Triceps2, Triceps 2 etc.
Very often when I am in special postions and there is pressure on the limb or muscle it twitches etc.
- Sometimes "Hotspots". Stay in one place for one day, like shoulder, biceps or tigh / knee. Typical "big ones" that you can easily see and feel.
- Some Feelings like "Explosions" , very high Frequency, like Popcorn is made under your skin. Have this especially in my right foot and right calve - frontside. But there are other places like left calf or foot.
So far ,nothing to "freak" out and absolutely normal for BFS.
But now my other Symptoms:
-Progressing weakness in the right Forearm in Combination with myoclonic jerks in now ALL of my fingers .
This started very slowly in my right Ringfinger. He moves from one side to the other , very lightly in October 05.
Now: If I try to do very slow movements with my Fingers, it is nearly impossible because they jump from one side to the other.
Especially the Middlefinger and the Ringfinger are affected, but more and more the Indexfinder, Thumb and the Pinkie start this, too.
For an example: Sometimes when my Indexfinger and my Middlefinger lying on the computer-mice and I try to do very slow movements with the PC-mice, my middlefinger is twichting from the left to the right.
This effect of the myoclonics ( i think these symptoms are myoclonics ??) is much more weaker when the fingers are cold. The heaviest effect is when the fingers are warm. It is nearly impossible to stretch all of my fingers without the movement of the ring finger or light movements of others.
Another point is the weakness: Now I am typing here and it is not easy. My fingers feel grave and especially my thumb muscle feels tired and weak. This ist ususally more a problem in the evening.
I have to add the there is the "feeling" of atrophy, too. If I give tension to my muscles, I see and feel differences between the left and the right limb. It is like if there are no more muscle-fibres in a lot of places at the right side.
This fit in with my problems with my Forearm. I know that there are the long muscles of the fingers that stretch them are beginning near the ellbow. The "flexors". I have problems with the power exact in this place.
Furthermore, my whole arm and my whole hand are not able to do some movements without a "gearwheel" effect : It is hardly to describe. I can´t do a very slow movement in a fluent way, it is in a lot of cases like the gearwheel.
The Jerks of the fingers begin in the left hand, too. The left small finger starts to move from one side to the other.
Similar effect at my right foot / calve : I have this "gearwheel" problem with my right foot and there is also the problem with Fascics and little crampis in the kneehole at the beginning of the calve-muscle.
Especially after Running or Exercises. There is definetly something wrong.
Furthermore I feel really often tired, despite the fact that I sleep
7-8 h.
If I try to do fitness-workout with weights, it is a horrible trip because quite early, my underarm not have the ability to do other excercices very long because the muscle not contracts, it only twitches later in the workout.
In general: My muscles twitch horribly after a workout, if I have to use them . More than it should be. Like theres no more energie in the muscle to do any contraction correctly and that mabe fits together wth the hypotesis of ALS and metabolic problems in the cells.
My Conclusion from ALL what I know and when I compare it to my symptoms:
I MUST have SOMETHING in my body.
A lot of dieseases are defintely not possible because they ruled out by a lot of tests.
If I keep everything in perspective I have to think about an LMND.
Why ?
It is typicall that in the early stages, at first ONE type of muscle fibres, Type 1 or Typ 2, get lost because of the denervation that usually starts in a Motonreuon for ONE muscle group ( Type 1 or 2 ) .
Because of this, the muscle has to get "repaired" by another, intact Motoneurone. However, this Neurone innervates Type 2 muscle fibres, so the Typ 1 muscle fibre become a typ 2 muscle fibre.
Untill the other Motoneurones also get "killed" and the whole muscle loses his innervation.
So lets look back to my symptoms: I can do every movement and everything, but some movements become more and more difficult and the muscle/ finger / arm "trembles" . The endurance gets slightly worse.
So my theory: A lot of muscle fibres of one type are destroyed but the Motoneurones of other fibres are not "affected".
This would fit together with my observation, that there are some muscle-mass left in different little places and strings on the right side.
Besides, I have widespread twichting in these limbs and what I know is that this is typicall for LMND. Twitches that vary in places in one muscle group are "bad" .
Another fact : I am very thin, only 59kg with 1,74m( 50-55 kg between 15 and 18!!) . I do sports, I had a lot of stress etc.
I am afraid that my body has said "its enough" and now...because I ve read about the coherences of thin people with less body fat and sports acitivities ans ALS....
Ok..now I ve written a lot and I donßt know If anybody here read evereything.
I have an appointment with a new Neuologist three weeks further.
This shall be my LAST Neuro Visit and NOW I will get measured MY PLACES where I have the problems.
I had a lot of EMGs in the past. I had EMGs of my right tigh, right lower calf, left tigh, right thumbmuscle between thumb and indexfinger, left shoulder muscle.
Everything was clear.
But I had never an EMG of my accurate problem places : Forearm and Head of the right calvemuscle.
I know that a lot of you know a lot about EMGs. I don´t know what to believe.
Not all of my Nerve roots are measured, so how will somebody now that theres nothing when some nerve roots and the Motoneurones there are not measured?
I don´t know what to think.
I know that somethings going wrong with my body and PLEASE don´t tell me something abput my Psych etc.
Like I said: I listed my Symptoms and my thoughts as clear and businesslike as possible. Theres nothing that I registered because of an anxiety attack or something else...just facts.
I am thankful for any respond !
But I don#t know whats going on! Typical Symptoms of BFS, however a lot more...nothing bulbar at all, no weight loss and every movements is possible but still progreesive neurologcal symptoms....a riddle...
Greetings from Germany
Simon
PS: I apologize for my typing mistakes and my bad englsh but its too late for this ( 1h in Emilyomousey ) and actually I should be in a disco instead searching and reading about als / bfs / mnd and having all those symptoms with my 20yrs....