grish1
New member
- Joined
- Aug 20, 2019
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
Hello,
I am a 29 year old male and I wanted to write this forum post to give those of you worried about their symptoms with (hopefully) some comfort in the fact that highly likely your symptoms are not a serious cause for concern, no matter how serious they appear to you.
For me, it started 5 months ago in March 2019 with twitching in my calves which very quickly spread throughout my entire body, affecting my trunk, shoulder and arms over the next 4 weeks. These twitches varied greatly in frequency and strength - from very jerky movements which could move the affected body part to very fine and rapid twitching which was barely visible with the eye but could be felt internally. I went to my GP who did some blood tests which all came back normal so obviously this raised my concerns as I couldn't explain where the twitching is coming from. It is then that I started to google more and more about the twitches and came across some great forums such as this one, and other websites. I would spend hours every day, reading the DIHALS forums on here and other forums reading about symptoms that other people experienced.
The knowledge that in rare circumstances twitching was the first symptom of ALS heightened my anxiety and I became super self conscious about everything happening in my body. After 6 weeks, I had a pain in my shoulder area and I was barely able to life my arm above my shoulder to perform simple tasks and then around 8 weeks after the initial twitching started, I started to feel a weird sensation in my tongue (sort of a heavy feeling) and perceived tiredness - in addition to a feeling of increased salivation. Again, please note how I use the word feeling - I could still do things quite normally.
But then I started to focus on my tongue and then my anxiety went through the roof. I literally checked my tongue in every mirror for abnormalities (and of course I detected some, as almost every body part is asymmetric). After approx. 10 weeks the twitching in my tongue started and I was convinced that I was one of the statistical outliers who got ALS quite young, without any family history and seemingly no other symptoms except the twitching & perceived weakness. Now, to give those concerned some perspective:
1. Statistically speaking the odds of having ALS if you are under the age of 30 is around 1:1.8 million
2. According to the literature the odds of twitching being the first symptom in ALS is around 6,7%
I was aware of the statistics and read all the literature and peer reviewed articles out there, but they didn't help me at all in calming my fears. I was referred to a neurologist by my GP and went to see him in July, 4 months after the twitching started. He did a clinical exam and listened to my concerns. He did note the twitches on the tongue but said that highly likely this is a benign condition but would refer me to Neurophysiologist for an EMG. The appointment was 4 weeks later and now things were appearing to get worse and worse. I oftentimes chocked whilst drinking a glass of water, food seemed to be getting stuck in my throat more often, I sometimes had very forceful twitching of my wrists etc etc. - the list goes on.
However, after visiting the neurologist in August, and after performing the EMG & NCS of my tongue/legs/arms he turned to me and said - 100% healthy. There is nothing wrong with me physically. However, our mind is so strong that we can certainly make symptoms come real. The twitching in my body is real, the perceived weakness is real but the important thing is that these things are benign. He told me to continue living my life fully and to completely forget any irrational fears about MND/ALS and recommended that I drink a lot of water every day, eat varied foods, reduce caffeine intake but maybe most importantly try to understand what might be causing the stress in everyday life (might very well be subconscious) and address this stress.
I spent the last 5 months worrying about a disease I was highly unlikely to have in the first place. But if there is one positive I can take from all of this is that I now know a lot about a disease which is not incurable, but simply underfunded. I have the highest respect for people diagnosed with this disease and from the bottom of my heart wish them all the strength and I truly believe that the next decade will find maybe not a cure, but a way to reduce progression to a minimum, allowing affected individuals to live a long life.
If this post helps at least one person in alleviating their fears, I feel that I have accomplished something.
All the best to everyone out there - you are not alone - no matter in which position you are.
I am a 29 year old male and I wanted to write this forum post to give those of you worried about their symptoms with (hopefully) some comfort in the fact that highly likely your symptoms are not a serious cause for concern, no matter how serious they appear to you.
For me, it started 5 months ago in March 2019 with twitching in my calves which very quickly spread throughout my entire body, affecting my trunk, shoulder and arms over the next 4 weeks. These twitches varied greatly in frequency and strength - from very jerky movements which could move the affected body part to very fine and rapid twitching which was barely visible with the eye but could be felt internally. I went to my GP who did some blood tests which all came back normal so obviously this raised my concerns as I couldn't explain where the twitching is coming from. It is then that I started to google more and more about the twitches and came across some great forums such as this one, and other websites. I would spend hours every day, reading the DIHALS forums on here and other forums reading about symptoms that other people experienced.
The knowledge that in rare circumstances twitching was the first symptom of ALS heightened my anxiety and I became super self conscious about everything happening in my body. After 6 weeks, I had a pain in my shoulder area and I was barely able to life my arm above my shoulder to perform simple tasks and then around 8 weeks after the initial twitching started, I started to feel a weird sensation in my tongue (sort of a heavy feeling) and perceived tiredness - in addition to a feeling of increased salivation. Again, please note how I use the word feeling - I could still do things quite normally.
But then I started to focus on my tongue and then my anxiety went through the roof. I literally checked my tongue in every mirror for abnormalities (and of course I detected some, as almost every body part is asymmetric). After approx. 10 weeks the twitching in my tongue started and I was convinced that I was one of the statistical outliers who got ALS quite young, without any family history and seemingly no other symptoms except the twitching & perceived weakness. Now, to give those concerned some perspective:
1. Statistically speaking the odds of having ALS if you are under the age of 30 is around 1:1.8 million
2. According to the literature the odds of twitching being the first symptom in ALS is around 6,7%
I was aware of the statistics and read all the literature and peer reviewed articles out there, but they didn't help me at all in calming my fears. I was referred to a neurologist by my GP and went to see him in July, 4 months after the twitching started. He did a clinical exam and listened to my concerns. He did note the twitches on the tongue but said that highly likely this is a benign condition but would refer me to Neurophysiologist for an EMG. The appointment was 4 weeks later and now things were appearing to get worse and worse. I oftentimes chocked whilst drinking a glass of water, food seemed to be getting stuck in my throat more often, I sometimes had very forceful twitching of my wrists etc etc. - the list goes on.
However, after visiting the neurologist in August, and after performing the EMG & NCS of my tongue/legs/arms he turned to me and said - 100% healthy. There is nothing wrong with me physically. However, our mind is so strong that we can certainly make symptoms come real. The twitching in my body is real, the perceived weakness is real but the important thing is that these things are benign. He told me to continue living my life fully and to completely forget any irrational fears about MND/ALS and recommended that I drink a lot of water every day, eat varied foods, reduce caffeine intake but maybe most importantly try to understand what might be causing the stress in everyday life (might very well be subconscious) and address this stress.
I spent the last 5 months worrying about a disease I was highly unlikely to have in the first place. But if there is one positive I can take from all of this is that I now know a lot about a disease which is not incurable, but simply underfunded. I have the highest respect for people diagnosed with this disease and from the bottom of my heart wish them all the strength and I truly believe that the next decade will find maybe not a cure, but a way to reduce progression to a minimum, allowing affected individuals to live a long life.
If this post helps at least one person in alleviating their fears, I feel that I have accomplished something.
All the best to everyone out there - you are not alone - no matter in which position you are.
