PassengerXIII
New member
- Joined
- Jul 28, 2022
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- MK
Hello,
I’m male 40yo and below is my unusual story.
I’m not looking for any diagnosis here but some kind of advices if it’s possible.
Until 2010 I was a very happy person, full of life and always doing sports.
In 2010, at the age of 28, almost the whole year was very stressful with some personal problems and professional rehabilitation issues.
During the summer I worked in a greenhouse.
At these days I felt an inexplicable fatigue of the muscles of the trunk, legs and arms.
Unfortunately, later in that period I was exposed to fungicide due to faulty equipment and almost without realizing it.
I can remember some severe headaches after that, which I attributed to the bad stress.
Later, towards the end of 2010 and beginning of 2011, I tried playing soccer and then I noticed a stiffness in my leg muscles and a feeling of dysmobility.
When I went for a run my calf muscles felt tight and during stretching the muscles were incredibly hard.
In summer of 2011, I started having problems and pains in my lower back and left leg,while I also noticed weakness in my left arm when lifting weights.
I then looked back in my mind and remembered that in the previous months I had quite strange symptoms such as muscle cramps, twitching and other symptoms related to als as I saw then on the internet.
In the first emg in 2011 I had a result of "possible anterior horn damage". I turned to a neurologist who, after the clinical examination, ruled out als and asked for a
new emg as the first one was done without needles and the measurements didn’t match with the conclusion.
In the second the result was "sparse high motor units"...
Those neurologists who saw it and seeing the clinical picture ruled out any possibility of als and referred me to a psychiatrist.
Since 2012 I have tried to continue my life normally, established my business, got married etc.
But I missed sports and at the same time I could see that the symptoms were still there.
My paternal family and my wife believed the doctors and thought I was hypochondriac.
In 2016, after a sudden lifting of an object, i suffered with a left foot drop. The MRI showed a problem in the vertebrae (pinch nerve) and fortunately after intensive physical therapy it returned.
I did an emg and it showed chronic neurogenic lesions in the left leg (excused due to hernia) and also chronic neurogenic lesions in the hands at the C7 point with a clear neck MRI.
The same old....''It's all in your head''
In 2019 my son was born and during those happy moments I could feel my facial muscles shaking when I laughed and I noticed an asymmetry in my face.
Doctors and family the same..."you don't have als, it's all in your mind"
All these years I observed a slow and gradual worsening of all symptoms culminating in April 22 when I suffered bell's palsy on the left side.
I did physiotherapy and it has come back 70-80%.
Since April until today, I have been seen by 3 neurologists and I have had another 3 emgs which are all clear.....(The docs made the emgs are at top 3 in my country)
All these years the muscles in the whole body have atrophied, I have mild swallowing issues and I feel that I am under-functioning and I sure that it is only a matter of time before I become disabled.
I forgot to mention that all these years i have done MRIs (brain,neck,thoracic,lumbar),numerous of blood test etc.
I'm totally frustrated....This is an endless nightmare.
Thank you and I’m sorry for any inconvenience.
I’m male 40yo and below is my unusual story.
I’m not looking for any diagnosis here but some kind of advices if it’s possible.
Until 2010 I was a very happy person, full of life and always doing sports.
In 2010, at the age of 28, almost the whole year was very stressful with some personal problems and professional rehabilitation issues.
During the summer I worked in a greenhouse.
At these days I felt an inexplicable fatigue of the muscles of the trunk, legs and arms.
Unfortunately, later in that period I was exposed to fungicide due to faulty equipment and almost without realizing it.
I can remember some severe headaches after that, which I attributed to the bad stress.
Later, towards the end of 2010 and beginning of 2011, I tried playing soccer and then I noticed a stiffness in my leg muscles and a feeling of dysmobility.
When I went for a run my calf muscles felt tight and during stretching the muscles were incredibly hard.
In summer of 2011, I started having problems and pains in my lower back and left leg,while I also noticed weakness in my left arm when lifting weights.
I then looked back in my mind and remembered that in the previous months I had quite strange symptoms such as muscle cramps, twitching and other symptoms related to als as I saw then on the internet.
In the first emg in 2011 I had a result of "possible anterior horn damage". I turned to a neurologist who, after the clinical examination, ruled out als and asked for a
new emg as the first one was done without needles and the measurements didn’t match with the conclusion.
In the second the result was "sparse high motor units"...
Those neurologists who saw it and seeing the clinical picture ruled out any possibility of als and referred me to a psychiatrist.
Since 2012 I have tried to continue my life normally, established my business, got married etc.
But I missed sports and at the same time I could see that the symptoms were still there.
My paternal family and my wife believed the doctors and thought I was hypochondriac.
In 2016, after a sudden lifting of an object, i suffered with a left foot drop. The MRI showed a problem in the vertebrae (pinch nerve) and fortunately after intensive physical therapy it returned.
I did an emg and it showed chronic neurogenic lesions in the left leg (excused due to hernia) and also chronic neurogenic lesions in the hands at the C7 point with a clear neck MRI.
The same old....''It's all in your head''
In 2019 my son was born and during those happy moments I could feel my facial muscles shaking when I laughed and I noticed an asymmetry in my face.
Doctors and family the same..."you don't have als, it's all in your mind"
All these years I observed a slow and gradual worsening of all symptoms culminating in April 22 when I suffered bell's palsy on the left side.
I did physiotherapy and it has come back 70-80%.
Since April until today, I have been seen by 3 neurologists and I have had another 3 emgs which are all clear.....(The docs made the emgs are at top 3 in my country)
All these years the muscles in the whole body have atrophied, I have mild swallowing issues and I feel that I am under-functioning and I sure that it is only a matter of time before I become disabled.
I forgot to mention that all these years i have done MRIs (brain,neck,thoracic,lumbar),numerous of blood test etc.
I'm totally frustrated....This is an endless nightmare.
Thank you and I’m sorry for any inconvenience.