Achilles84
New member
- Joined
- Dec 29, 2009
- Messages
- 6
- Reason
- Other
- Country
- GER
- State
- SA
- City
- Naumburg
Hi there,
that is Patrick,a 25 year old from Germany.
I´m writing this post because I really need some help from you guys to better evaluate my situation.I have just lost the ability to look at everything in a clear way.
My weakness issues started in June with a weird feeling when walking.Then within weeks a kind of general weakness spreaded throughout my whole body.Every movement from walking to holding a cup of tea seemed to be unusual heavy.Every little task required more effort than usual.What I also noticed was that my body stability was a bit disrupted.Even when standing I felt kind of unstable.Along with that I had other symptoms like exhaustion,dizzyness,fatigue and heart issues which all started months before after a kind of flu like illness from which I never seemed to recover.Anyway since June the weakness issues got most of my attention leaving the other problems in the backround.
I visited two neurologists which performed standard examinations with no result.Something psychological was assumed.Although that could have made sense I deceided to check in to my local hospital for further neurologic evaluation.Another exam,lumbar punction,NCV test´s all came back negative.I was adviced to seek more in the direction of psychological issues but refused to do so.This theory was to simple for me and to make it even worse I had developed some strange feeling that I was going to die,potentially from ALS.Don´t ask me why.It´s just an horrific feeling that I have in every waking moment since the beginning of June.I still can´t say if it is some kind of real intuition or just a kind of extreme anxiety that manifested itself for various reasons.I try to find an answer for this all and every day but still can´t say it.However this feeling and the symptoms forced me to get further evaluations of my situation with the months to come.
So I deceided to make an appointment with a more experienced neurologist,a professor at my local university.By that time my symptoms had not changed that much,but I had developed muscle twitches and what I considered as atrophy on my feet and hands.Just as a note,because of the situation and how it all started I had not done any kind of exercise since March.My daily movement was limited to the most basic needs,avoiding every greater movement.A lot of my time I spent in front of the PC looking for help and explanations for my situation.Just to give you an view of my daily living at this time.As I said on July I went to the University.I told my concerns to the professor.He tested a few things,ordered blood work,NCV and and EMG which all came back normal.After that he assured me that there is no way that I have ALS.He told me that he had seen hundreds of patients with it and that I simply dont have it.His diagnosis was also something of psychosomatic nature.I tried to believe it but with the symptoms and my weird feeling it lasted only a few hours...
What was my problem?! 4 Neurologists including an expert assured me I´m fine,I had clear examinations and a clean EMG but I was still not able to believe it even a little bit.The symptoms and these weird feeling were just to strong.
So the story went on.Unable to let go I went to the next neuro in August which performed one of the best neurological examinations I have known so far.He checked every possible neurological sign and reaction and came to the same conclusion as the neuro´s before him.Apart from vivid reflexes and an general tension he could see nothing abnormal.Even my hands and feet that showed signs of lost muscle mass didnt catch his attention in any way.He advised me to look into other directions mainly psychological causes.That should have been good news...but it was hopeless because as before I couldnt believe it.My body felt so strange and unbalanced with all these weird symptoms and this horrible feeling.That along with a disease that cannot possibly be ruled out kept me completly trapt.So it would not be my last visit to a neurologist...
Meanwhile I was constantly looking for other organic diagnosis,rigidly ignoring psychological issues.I checked everything.My thyroid,nutritional deficiencies,rheumatic factors and so on.Nothing pointed in a certain direction.Instead,it made everything just more confusing.My calcium level was above normal which caused me to check out every possible reason for this without any result.I had also slightly raised thyroid antibodies which caused me to investigate in that direction,but without clear evidence of anything wrong.My magnesium levels are relatively low which is one of the things that are still in question considering my symptoms.To sum it up,there are still a few things like magnesium,the thyroid and even lyme disease that would be worth a further look.But my main fear was and is ALS or eventually some nasty nerve disease.
So there we are,August 2009.My symptoms were muscle weakness in the whole body which was slightly worse on the left side.My muscles were jittering,shaking and tremor all the time even under slight stress.They also felt soft and jelly like as if I could feel every bone through the muscles.My balance was off as I had no longer a stable feeling in my feet.My ankles felt weak and unstable.Maintaining balance was more difficult than it should be and whenever I changed my focus away from walking the instability of my feet seemed to increase.Within the following months pain developed as another symptom.Pain in the joints and the bones mostly.Actually the most distressing pain is in my feet as I have the feeling that I walk just on the pure bones.Atrophy of my hands and feet has become worse which means I have lost a bit more muscle tissue over the months which to me can clearly be seen at my hands and feet.But that´s not enough.I have developed parasthesis in my hands and feet and lost furhter stabilitya in my ankles due to instabile ligaments.
During August and December I had 3 more neurologic evaluations.One of them was a 7 day stationary visit at one of the best neurologic clinics here in Germany.I was under the special care of a famous professor who is considered one of the best in europe.In addition to physical exams I got another extensive EMG (4 muscles) from an neuro specialized in EMG testing done.Everything totally clean.The Prof means its nothing neurological.In the initial examination he has even told me that I have indeed real fasciculations but that I don´t have to worry about them.He just found the fasciculations " interesting"
In the mid of november I went to another experienced neuro with all my complaints.He also said "no sign of a neurologic disease".And finally in december I went once again back to the first neuro professor who did some additional testing for tremor,another NCV Test as well as some nervous function tests.Everything normal,with the exception of an extremly elevated stress level.The Prof says he is pretty sure that this high stress level is causing my symptoms.I gave him even a special list of my actual symptoms with all the pains,weakness,twitching,instability and so on.He´s believes that all this is real,but assured me it´s not neurological.As for the atrophy he took a look at my hands and feet and could follow me that there is indeed muscle loss.But in his opinion it is not neurological atrophy,more a kind of disuse atrophy.That was december 11th.
And that´s were I stand now.Still thinking I have ALS or some other nasty nerve disease.Why?
Lets summarize:
Muscle weakness in the whole body that causes a lot of jittering,shaking and tremor with every movement.My muscles are shaking under pressure,feel like jelly,twitch and fasciculate.
My balance and stability seems ruined.I lack stability when standing,walking,sitting.Every position needs more effort than usual.
I have pain in several joints and bones,most noticable when walking.I can really feel every bone through my foot like there is no muscle mass at all.
I have lost muscle mass mostly on my hands and feet which is without doubt
I have tingling,burning sensations in my hands and feet along with blood circualtion problems.
other symtpoms are muscle fatigue,general fatigue,sporadic cramps,exhaustion and further strange feelings and sensations.
all these symptoms make it extremly hard to even get a bit away of the neurological issues.because it just seems to fit so perfectly,doesnt it?!
I mean I cannot walk anymore without pain which I think must be caused by not enough tissue covering my feet.And when I look at my feet I can really see that there is not all to much muscle mass at the moment.Additionally my ankle muscles seem weak which causes my feet to be instable.That also seems to make perfect sense.And on top of all that I have fasciculations on my feet which are barely noticable.Consider all of this together and then try to get away from something like ALS...
or if you look at it on a general basis: I have muscle weakness,atrophy and balance and coordination issues and fasciculations...that at least sounds like ALS.
Fasciculations have occured after the weakness,which could be another pro ALS argument.
Hand and Foot Muscles that grow back...
and then this overwhelming feeling that everything is already over.A feeling that surrounds me every moment and that I cannot fight in anyway.Even if I had no symptoms this feeling would drive me mad,but additionally with these symptoms it´s pure horror.Probably it´s intuition telling me that there is no way out of this.
The clean EMG´s and the many examinations cannot really calm me down as they are no fire proof argument against ALS.
so much on the bad impressions...
on the other hand,some things are just not making sense:
first and foremost,considering the severity of my situation there should be at least some abnormal finding in an examination or in the electrophysiology...
I mean common I have weakness,I have atrophy,I have fasciculations,I can hardly walk and coordinate my movements.If all this is due to a nerve and muscle disease why is there not a single evidence...? no abnormal reflex,no spasticity,no dirty EMG or NCV...using common sense it seems extremly unrealistic that with all this severe symptoms there is no clinical or electrophysiological support to back it up.So it´s either a very strange case or indeed nothing neurological...
You can even go into more detail on this one.If my muscles are really so weak,why doesnt one of the neurologists notice anything at all? If there is neurogenic atrophy already,shouldnt there be a noticable clinical weakness?
that leads us to another interesting aspect.my muscle weakness is real for sure.I have lost muscle tissue without doubt.My bones and joints hurt a lot under pressure.All this is as real as it can be.Nonetheless my grip strenght is still very good at about 200 pounds.I can curl 50 lbs dumbells as in my best athletic times.I can do 50 pushups in a row and press 110 lbs overhead or do wristcurls with a 50lbs plate.All these numbers are as good as in my best athletic times when I had none of the today problems.Doing this does not look or feel good as it is a whole lot of jittering and shaking but if I push through it it´s not a problem.Two months ago I have done a bit of handstand training for two weeks and raised my overhead press from 110 to 120 lbs,which shows that muscles are still reacting to training in a good way.all of this seems not very ALS like I guess.On the one hand my arm becomes heavy when I hold an empty cup for a minute into the air,but on the other hand I can curl huge weights like in my best times...
and what about other factors I have to take in consideration...
I´m now completely inactive for about 9 months.Sure I´m not bedridden or paralyzed but not far away from this Within the last month I have not exercises in any way.I have not done even a minimum to keep my body in shape.If I have moved my body 1-2 hours a day from point A to point B you can consider this as a maximum.I have gone from an fit alround athlet,hiking,swimming,biking,playing basketball every week to near zero movement.Isnt it plausible that I loose a good deal of muscle mass because of this?! The body is very rigid,and what it doesnt needs at the moment...I guess its hard to say if that could be a kind of disuse atrophy but it´s at least possible.And the fact that I notice it more clearly on the hands and feet maybe because there are the smallest muscles,and even minimum loss is noticed quite easily there.
Then there is the magnesium issue.I´m currently only a bit away from clinical deficiency which must be treated.As a few of you might know magnesium blood tests are not very reliable,and the blood levels are the last resort at all.Meaning that if these levels are low,one can expect a already serious intracellular lack of the mineral.If that´s the case it could cause alot of my symptoms from muscle weakness to fasciculations.
And then the psychological issues.I have not paid them any respect so far not believing they can create some drastic symptoms.But reality is I had severe emotional and psychological problems before all this started.Many unsolved problems caused immense stress to me,and as my mind was not able anymore to handle the stress it has eventually converted it into physical symptoms which is the basic theory of somatization disorder which nearly all docs told me I have.It´s the least imaginable option for me,but it´s possible.
So you see,I´m a very very though case.I have symptoms closely resembling serious neurological disorders,but there are some things that do not match the way they should.
I´m either an extremly rare case of such a disorder,being misdiagnosed by several quite good neurologists or my situation maybe the product of a few combined factors.Intense stress,nutritional deficiencies,inactivity,or maybe lyme diease...
I guess this strange weird feeling makes it the hardest for me to get a clear view.As I dont know if it is intuition or just itself a symptom of a psychological issue.Without this feeling I could thrust the doc´s a bit more and eventually give the other options a try.
but in the end it stays extremly hard.With all these symptoms and impressions I always feel like I´m just one step away from a deadly diagnosis.And that raises that stress level that I would eventually need to reduce in order to get better...it´s a vicious cycle.
maybe you can assist me a bit with your thoughts and view´s.everything could help
at the moment my life is a never ending nightmare and I become weaker with each day.
so maybe you can look at all this and find something positive that I´m not able to see anymore...
thx for reading
best wishes to all of you
Patrick
that is Patrick,a 25 year old from Germany.
I´m writing this post because I really need some help from you guys to better evaluate my situation.I have just lost the ability to look at everything in a clear way.
My weakness issues started in June with a weird feeling when walking.Then within weeks a kind of general weakness spreaded throughout my whole body.Every movement from walking to holding a cup of tea seemed to be unusual heavy.Every little task required more effort than usual.What I also noticed was that my body stability was a bit disrupted.Even when standing I felt kind of unstable.Along with that I had other symptoms like exhaustion,dizzyness,fatigue and heart issues which all started months before after a kind of flu like illness from which I never seemed to recover.Anyway since June the weakness issues got most of my attention leaving the other problems in the backround.
I visited two neurologists which performed standard examinations with no result.Something psychological was assumed.Although that could have made sense I deceided to check in to my local hospital for further neurologic evaluation.Another exam,lumbar punction,NCV test´s all came back negative.I was adviced to seek more in the direction of psychological issues but refused to do so.This theory was to simple for me and to make it even worse I had developed some strange feeling that I was going to die,potentially from ALS.Don´t ask me why.It´s just an horrific feeling that I have in every waking moment since the beginning of June.I still can´t say if it is some kind of real intuition or just a kind of extreme anxiety that manifested itself for various reasons.I try to find an answer for this all and every day but still can´t say it.However this feeling and the symptoms forced me to get further evaluations of my situation with the months to come.
So I deceided to make an appointment with a more experienced neurologist,a professor at my local university.By that time my symptoms had not changed that much,but I had developed muscle twitches and what I considered as atrophy on my feet and hands.Just as a note,because of the situation and how it all started I had not done any kind of exercise since March.My daily movement was limited to the most basic needs,avoiding every greater movement.A lot of my time I spent in front of the PC looking for help and explanations for my situation.Just to give you an view of my daily living at this time.As I said on July I went to the University.I told my concerns to the professor.He tested a few things,ordered blood work,NCV and and EMG which all came back normal.After that he assured me that there is no way that I have ALS.He told me that he had seen hundreds of patients with it and that I simply dont have it.His diagnosis was also something of psychosomatic nature.I tried to believe it but with the symptoms and my weird feeling it lasted only a few hours...
What was my problem?! 4 Neurologists including an expert assured me I´m fine,I had clear examinations and a clean EMG but I was still not able to believe it even a little bit.The symptoms and these weird feeling were just to strong.
So the story went on.Unable to let go I went to the next neuro in August which performed one of the best neurological examinations I have known so far.He checked every possible neurological sign and reaction and came to the same conclusion as the neuro´s before him.Apart from vivid reflexes and an general tension he could see nothing abnormal.Even my hands and feet that showed signs of lost muscle mass didnt catch his attention in any way.He advised me to look into other directions mainly psychological causes.That should have been good news...but it was hopeless because as before I couldnt believe it.My body felt so strange and unbalanced with all these weird symptoms and this horrible feeling.That along with a disease that cannot possibly be ruled out kept me completly trapt.So it would not be my last visit to a neurologist...
Meanwhile I was constantly looking for other organic diagnosis,rigidly ignoring psychological issues.I checked everything.My thyroid,nutritional deficiencies,rheumatic factors and so on.Nothing pointed in a certain direction.Instead,it made everything just more confusing.My calcium level was above normal which caused me to check out every possible reason for this without any result.I had also slightly raised thyroid antibodies which caused me to investigate in that direction,but without clear evidence of anything wrong.My magnesium levels are relatively low which is one of the things that are still in question considering my symptoms.To sum it up,there are still a few things like magnesium,the thyroid and even lyme disease that would be worth a further look.But my main fear was and is ALS or eventually some nasty nerve disease.
So there we are,August 2009.My symptoms were muscle weakness in the whole body which was slightly worse on the left side.My muscles were jittering,shaking and tremor all the time even under slight stress.They also felt soft and jelly like as if I could feel every bone through the muscles.My balance was off as I had no longer a stable feeling in my feet.My ankles felt weak and unstable.Maintaining balance was more difficult than it should be and whenever I changed my focus away from walking the instability of my feet seemed to increase.Within the following months pain developed as another symptom.Pain in the joints and the bones mostly.Actually the most distressing pain is in my feet as I have the feeling that I walk just on the pure bones.Atrophy of my hands and feet has become worse which means I have lost a bit more muscle tissue over the months which to me can clearly be seen at my hands and feet.But that´s not enough.I have developed parasthesis in my hands and feet and lost furhter stabilitya in my ankles due to instabile ligaments.
During August and December I had 3 more neurologic evaluations.One of them was a 7 day stationary visit at one of the best neurologic clinics here in Germany.I was under the special care of a famous professor who is considered one of the best in europe.In addition to physical exams I got another extensive EMG (4 muscles) from an neuro specialized in EMG testing done.Everything totally clean.The Prof means its nothing neurological.In the initial examination he has even told me that I have indeed real fasciculations but that I don´t have to worry about them.He just found the fasciculations " interesting"
In the mid of november I went to another experienced neuro with all my complaints.He also said "no sign of a neurologic disease".And finally in december I went once again back to the first neuro professor who did some additional testing for tremor,another NCV Test as well as some nervous function tests.Everything normal,with the exception of an extremly elevated stress level.The Prof says he is pretty sure that this high stress level is causing my symptoms.I gave him even a special list of my actual symptoms with all the pains,weakness,twitching,instability and so on.He´s believes that all this is real,but assured me it´s not neurological.As for the atrophy he took a look at my hands and feet and could follow me that there is indeed muscle loss.But in his opinion it is not neurological atrophy,more a kind of disuse atrophy.That was december 11th.And that´s were I stand now.Still thinking I have ALS or some other nasty nerve disease.Why?
Lets summarize:
Muscle weakness in the whole body that causes a lot of jittering,shaking and tremor with every movement.My muscles are shaking under pressure,feel like jelly,twitch and fasciculate.
My balance and stability seems ruined.I lack stability when standing,walking,sitting.Every position needs more effort than usual.
I have pain in several joints and bones,most noticable when walking.I can really feel every bone through my foot like there is no muscle mass at all.
I have lost muscle mass mostly on my hands and feet which is without doubt
I have tingling,burning sensations in my hands and feet along with blood circualtion problems.
other symtpoms are muscle fatigue,general fatigue,sporadic cramps,exhaustion and further strange feelings and sensations.
all these symptoms make it extremly hard to even get a bit away of the neurological issues.because it just seems to fit so perfectly,doesnt it?!
I mean I cannot walk anymore without pain which I think must be caused by not enough tissue covering my feet.And when I look at my feet I can really see that there is not all to much muscle mass at the moment.Additionally my ankle muscles seem weak which causes my feet to be instable.That also seems to make perfect sense.And on top of all that I have fasciculations on my feet which are barely noticable.Consider all of this together and then try to get away from something like ALS...
or if you look at it on a general basis: I have muscle weakness,atrophy and balance and coordination issues and fasciculations...that at least sounds like ALS.
Fasciculations have occured after the weakness,which could be another pro ALS argument.
Hand and Foot Muscles that grow back...
and then this overwhelming feeling that everything is already over.A feeling that surrounds me every moment and that I cannot fight in anyway.Even if I had no symptoms this feeling would drive me mad,but additionally with these symptoms it´s pure horror.Probably it´s intuition telling me that there is no way out of this.
The clean EMG´s and the many examinations cannot really calm me down as they are no fire proof argument against ALS.
so much on the bad impressions...
on the other hand,some things are just not making sense:
first and foremost,considering the severity of my situation there should be at least some abnormal finding in an examination or in the electrophysiology...
I mean common I have weakness,I have atrophy,I have fasciculations,I can hardly walk and coordinate my movements.If all this is due to a nerve and muscle disease why is there not a single evidence...? no abnormal reflex,no spasticity,no dirty EMG or NCV...using common sense it seems extremly unrealistic that with all this severe symptoms there is no clinical or electrophysiological support to back it up.So it´s either a very strange case or indeed nothing neurological...
You can even go into more detail on this one.If my muscles are really so weak,why doesnt one of the neurologists notice anything at all? If there is neurogenic atrophy already,shouldnt there be a noticable clinical weakness?
that leads us to another interesting aspect.my muscle weakness is real for sure.I have lost muscle tissue without doubt.My bones and joints hurt a lot under pressure.All this is as real as it can be.Nonetheless my grip strenght is still very good at about 200 pounds.I can curl 50 lbs dumbells as in my best athletic times.I can do 50 pushups in a row and press 110 lbs overhead or do wristcurls with a 50lbs plate.All these numbers are as good as in my best athletic times when I had none of the today problems.Doing this does not look or feel good as it is a whole lot of jittering and shaking but if I push through it it´s not a problem.Two months ago I have done a bit of handstand training for two weeks and raised my overhead press from 110 to 120 lbs,which shows that muscles are still reacting to training in a good way.all of this seems not very ALS like I guess.On the one hand my arm becomes heavy when I hold an empty cup for a minute into the air,but on the other hand I can curl huge weights like in my best times...
and what about other factors I have to take in consideration...
I´m now completely inactive for about 9 months.Sure I´m not bedridden or paralyzed but not far away from this
Within the last month I have not exercises in any way.I have not done even a minimum to keep my body in shape.If I have moved my body 1-2 hours a day from point A to point B you can consider this as a maximum.I have gone from an fit alround athlet,hiking,swimming,biking,playing basketball every week to near zero movement.Isnt it plausible that I loose a good deal of muscle mass because of this?! The body is very rigid,and what it doesnt needs at the moment...I guess its hard to say if that could be a kind of disuse atrophy but it´s at least possible.And the fact that I notice it more clearly on the hands and feet maybe because there are the smallest muscles,and even minimum loss is noticed quite easily there.Then there is the magnesium issue.I´m currently only a bit away from clinical deficiency which must be treated.As a few of you might know magnesium blood tests are not very reliable,and the blood levels are the last resort at all.Meaning that if these levels are low,one can expect a already serious intracellular lack of the mineral.If that´s the case it could cause alot of my symptoms from muscle weakness to fasciculations.
And then the psychological issues.I have not paid them any respect so far not believing they can create some drastic symptoms.But reality is I had severe emotional and psychological problems before all this started.Many unsolved problems caused immense stress to me,and as my mind was not able anymore to handle the stress it has eventually converted it into physical symptoms which is the basic theory of somatization disorder which nearly all docs told me I have.It´s the least imaginable option for me,but it´s possible.
So you see,I´m a very very though case.I have symptoms closely resembling serious neurological disorders,but there are some things that do not match the way they should.
I´m either an extremly rare case of such a disorder,being misdiagnosed by several quite good neurologists or my situation maybe the product of a few combined factors.Intense stress,nutritional deficiencies,inactivity,or maybe lyme diease...
I guess this strange weird feeling makes it the hardest for me to get a clear view.As I dont know if it is intuition or just itself a symptom of a psychological issue.Without this feeling I could thrust the doc´s a bit more and eventually give the other options a try.
but in the end it stays extremly hard.With all these symptoms and impressions I always feel like I´m just one step away from a deadly diagnosis.And that raises that stress level that I would eventually need to reduce in order to get better...it´s a vicious cycle.
maybe you can assist me a bit with your thoughts and view´s.everything could help
at the moment my life is a never ending nightmare and I become weaker with each day.
so maybe you can look at all this and find something positive that I´m not able to see anymore...
thx for reading
best wishes to all of you
Patrick
