Hello everybody, my name is Dennis. I am 46 years old and have three children aged five, 12 and 14. From 2014 until 2020 I worked night shift five nights a week. My job entailed a fair bit of physical activity. A typical shift would require me to carry equipment, walking down normally 120 stairs then walking a few miles on ballasted track and back up the 120 stairs. Throughout my life have even a healthy diet, exercise regularly and would consider myself to be lived a healthy lifestyle in excellent health throughout. I have always had an athletic physique and I used to swim three times a week, averaging 1600 m in 30 minutes. I was strong and used to do little bit of weight training, sit ups and push ups daily. Retrospectively to my diagnosis my onset started with breathlessness which became apparent to me in September 2019. I had previously had never experienced fatigue and breathlessness while undertaking normal activities like walking up stairs or swimming.
It was in September 2019 while walking up a flight of stairs that I was too breathless and fatigued to do the whole flight in one go. I had to stop and catch my breath before continuing to the top of the stairs. Granted the number of stairs was 100, however I was exceptionally fit at the time. I have also noticed that when I started to swim I was struggling to maintain a rhythm and control my breathing. I had an overwhelming sensation that I was not getting enough hair into my lungs. I had also noticed that I was starting to get cramps in my feet, hamstrings and calf muscles. From about December 2019 I had noticed that when I was tired I would get terrible restless leg syndrome when trying to fall asleep and when I woke up and I was very tired my hands would tremble. I started to notice when I was brushing my teeth that muscle in my deltoid twitch during the action of brushing my teeth.
In March 2020 I contracted the coronavirus, which took me about six weeks to fully recover from. I had the temperature, very painful lungs with difficulty breathing. I had a change in smell whereby I could not correctly identify things by their smell. I had a terrible headache for days that was associated with more pain when I used my eyes to look left right up or down and I was generally constantly fatigue. The country then went into lockdown and I ended up being furloughed. During this time I started doing some DIY, while I was stripping paint of a door frame it became apparent that I was unable to keep my arms above my shoulder height for an extended period of time. If I lowered my arms, after a few minutes I could lift my arms up again above my head before they would quickly fatigue and I would need to lower arms again. By late May I was noticing considerable muscle atrophy in my deltoid, bicep, back and trapezius muscles and restless leg syndrome became the bane of my life. Every night I tried to get asleep I would feel a build-up of energy that would release into calf muscle and make me involuntarily moved my foot at the same time as being painful would make me immensely wide-awake. It would take me hours to eventually fall asleep then when I woke up in the morning I was suffering with fatigue.
I called my GP in July during which I mentioned a weakness in my arm. She asked me to come in and see her during which she tested my reflexes and got me to blow into an instrument presumably to measure respiratory function. Three days later I had an appointment to see a neurologist at the Royal Free London. The consultant and his registrar had a look at the photographs I had brought as evidence of my muscle atrophy and at this point my muscles were twitching all over my body, and weakness in my hands and arms. The neurologist wanted further tests, blood, nerve conduction study and MRI scan. This was scheduled the following week and the follow-up appointment at the end of the week. So it was two weeks from the time I saw my GP to the time I saw the neurologist with a diagnosis. The neurologist told me I had motor neuron disease, and wanted to refer me to the neurologist who was an expert in the field. He prescribed me gabapentin which absolutely resolved and restless leg issue, and stopped me being so tearful all the time. The appointment of the second neurologist was due to go ahead in August 2020 but there was an expected second wave of coronavirus so that appointment got moved to September 2020. During this consultation, reflexes were checked once again and a detailed history of symptoms. He concurred with the diagnosis of motor neuron disease and gave me a prognosis including a life expectancy of 2 to 5 years from the onset.
I am a tertiary educated professional accredited engineer with an Internet connection and computer so I did a lot of research on the Internet regarding MND or, also known as, in other countries as ALS. Most medical journals and very helpful websites relating to MND/ALS have the same dire beginning followed by pretty scary stuff relating to progression of losing control of a voluntary muscle control with severely reduced life expectancy. There was a lot of information I was trying to digest combined by engaging with the neurological and stroke department from Camden NHS, who were very helpful including giving me a link to things related to the PEG. It’s a lot for one to start to comprehend.
Due to traumatic events in my youth and early adult I learned to suppress fear and anxiety. I’ve come to the realisation that I pretend that I don’t care about dying but I actually do fear it. I feared not because I’m scared to lose this life but the impact that my demise will have on my family members. It was emotionally impossible to for me to tell the two older kids but luckily my wife could. I am at loss because I feel I have no purpose in life any more due to the prognosis and diagnosis of MND. When I meditate I frequently have a vision of something very closely represents a motorway junction and I must decide which side of the fork to take. The destination is the same but the journey is different. In case you missed it destination is death and the journey life.
As an engineer I have to consider that MND/ALS is diagnosed by elimination of all mimicking illnesses and diseases. There is no conclusive test to give a result and by that test result alone indicates, indisputably, a positive result of MND/ALS. I am a firm believer that we discover or learn new things every day. It is therefore possible that there may be undiscovered illnesses that do mimic MND/ALS. Therefore find it very difficult to accept the prognosis but I accept that I do have some signs and symptoms that mimic MND/ALS.
I have made some changes in my life I now take antioxidants in the form of a garlic extract, half a Berocca tablet, vitamins C, D, E, magnesium, alpha lipoic acid, Co Q10, melatonin and CBD oil. I am eating more fibre, more carbs and less saturated fat and no fish. I previously was on a keto diet. I have an amalgam filling that is coming out in two weeks time. I was not aware at the time of my filling that the amalgam filling will release mercury is a vapour for the rest of your life!!! I also meditate and exercise daily as best I can.
Apologies for such a long first post but I just needed to get out there.
D
It was in September 2019 while walking up a flight of stairs that I was too breathless and fatigued to do the whole flight in one go. I had to stop and catch my breath before continuing to the top of the stairs. Granted the number of stairs was 100, however I was exceptionally fit at the time. I have also noticed that when I started to swim I was struggling to maintain a rhythm and control my breathing. I had an overwhelming sensation that I was not getting enough hair into my lungs. I had also noticed that I was starting to get cramps in my feet, hamstrings and calf muscles. From about December 2019 I had noticed that when I was tired I would get terrible restless leg syndrome when trying to fall asleep and when I woke up and I was very tired my hands would tremble. I started to notice when I was brushing my teeth that muscle in my deltoid twitch during the action of brushing my teeth.
In March 2020 I contracted the coronavirus, which took me about six weeks to fully recover from. I had the temperature, very painful lungs with difficulty breathing. I had a change in smell whereby I could not correctly identify things by their smell. I had a terrible headache for days that was associated with more pain when I used my eyes to look left right up or down and I was generally constantly fatigue. The country then went into lockdown and I ended up being furloughed. During this time I started doing some DIY, while I was stripping paint of a door frame it became apparent that I was unable to keep my arms above my shoulder height for an extended period of time. If I lowered my arms, after a few minutes I could lift my arms up again above my head before they would quickly fatigue and I would need to lower arms again. By late May I was noticing considerable muscle atrophy in my deltoid, bicep, back and trapezius muscles and restless leg syndrome became the bane of my life. Every night I tried to get asleep I would feel a build-up of energy that would release into calf muscle and make me involuntarily moved my foot at the same time as being painful would make me immensely wide-awake. It would take me hours to eventually fall asleep then when I woke up in the morning I was suffering with fatigue.
I called my GP in July during which I mentioned a weakness in my arm. She asked me to come in and see her during which she tested my reflexes and got me to blow into an instrument presumably to measure respiratory function. Three days later I had an appointment to see a neurologist at the Royal Free London. The consultant and his registrar had a look at the photographs I had brought as evidence of my muscle atrophy and at this point my muscles were twitching all over my body, and weakness in my hands and arms. The neurologist wanted further tests, blood, nerve conduction study and MRI scan. This was scheduled the following week and the follow-up appointment at the end of the week. So it was two weeks from the time I saw my GP to the time I saw the neurologist with a diagnosis. The neurologist told me I had motor neuron disease, and wanted to refer me to the neurologist who was an expert in the field. He prescribed me gabapentin which absolutely resolved and restless leg issue, and stopped me being so tearful all the time. The appointment of the second neurologist was due to go ahead in August 2020 but there was an expected second wave of coronavirus so that appointment got moved to September 2020. During this consultation, reflexes were checked once again and a detailed history of symptoms. He concurred with the diagnosis of motor neuron disease and gave me a prognosis including a life expectancy of 2 to 5 years from the onset.
I am a tertiary educated professional accredited engineer with an Internet connection and computer so I did a lot of research on the Internet regarding MND or, also known as, in other countries as ALS. Most medical journals and very helpful websites relating to MND/ALS have the same dire beginning followed by pretty scary stuff relating to progression of losing control of a voluntary muscle control with severely reduced life expectancy. There was a lot of information I was trying to digest combined by engaging with the neurological and stroke department from Camden NHS, who were very helpful including giving me a link to things related to the PEG. It’s a lot for one to start to comprehend.
Due to traumatic events in my youth and early adult I learned to suppress fear and anxiety. I’ve come to the realisation that I pretend that I don’t care about dying but I actually do fear it. I feared not because I’m scared to lose this life but the impact that my demise will have on my family members. It was emotionally impossible to for me to tell the two older kids but luckily my wife could. I am at loss because I feel I have no purpose in life any more due to the prognosis and diagnosis of MND. When I meditate I frequently have a vision of something very closely represents a motorway junction and I must decide which side of the fork to take. The destination is the same but the journey is different. In case you missed it destination is death and the journey life.
As an engineer I have to consider that MND/ALS is diagnosed by elimination of all mimicking illnesses and diseases. There is no conclusive test to give a result and by that test result alone indicates, indisputably, a positive result of MND/ALS. I am a firm believer that we discover or learn new things every day. It is therefore possible that there may be undiscovered illnesses that do mimic MND/ALS. Therefore find it very difficult to accept the prognosis but I accept that I do have some signs and symptoms that mimic MND/ALS.
I have made some changes in my life I now take antioxidants in the form of a garlic extract, half a Berocca tablet, vitamins C, D, E, magnesium, alpha lipoic acid, Co Q10, melatonin and CBD oil. I am eating more fibre, more carbs and less saturated fat and no fish. I previously was on a keto diet. I have an amalgam filling that is coming out in two weeks time. I was not aware at the time of my filling that the amalgam filling will release mercury is a vapour for the rest of your life!!! I also meditate and exercise daily as best I can.
Apologies for such a long first post but I just needed to get out there.
D
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