Matt21
Member
- Joined
- Aug 8, 2011
- Messages
- 20
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
- City
- Toronto
Hello Everyone,
I got some personal messages about my status and thought of sharing with you. I am still freaking out over ALS by the way, which is not healthy at all...
I'm a 39 yr old man who has been experiencing ongoing neurological/muscle issues for the last 10 years. I will summarize the progression below and if anyone has some suggestions or can relate from personal experience, I would love to hear from you. I have not been given a definite diagnosis of anything as of yet. Below is my best recollection in chronological order of this journey:
- It started when I noticed a difference when biking, it simply became more difficult to do the same path as I had always taken to go to university - 2007
- At the same time, I noticed that i would always wake up fatigued with quads and thighs feeling as if i had ran the day before (which i hadn't) - 2007
- I saw a few doctors who didn't notice anything wrong, one suggested CFS and to wait it out. My symptoms never improved, after I move my legs for a while they get a bit better in terms of the stiffness/numbness going away. Since I was having headaches I was referred to a neurologist.
- In 2008, the neurologist did an mri and noticed a small syrinx at my c2-c3 level. It is a small sac inside my spinal cord that is 2mm wide and 9mm long. Apparently I was born like that and this is not the reason for any of these symptoms although opinions differ on that too.
- I waited for about 2 years and then in 2010 I decided to go to the gym to get in shape. After my first workout, all my back muscles became so stiff that i had all sorts of back pain for about 2 months
- Over time, i became more easily tired. Walking up stairs i get out of breath.
- Whenever i flex my muscles, they shake like crazy. I get all sorts of tremors when squatting, trying a plank, flexing biceps. noticed that in 2010/2011. It is still ongoing and is worst than before.
- Developed intense twitching body wide that is exacerbated by anxiety. Also noticed a muscle rippling effect under my skin when doing a squat, shoulder lifts, etc. - 2012 to today
- The weakness seems always proximal but stiffness develops after i use my hands or feet for an extended period of time. For example, after cleaning wheels of a car, my fingers are stiff like metal wires. After playing some soccer, my feet feel the same - notice in 2012/2013
- Feeling of heaviness spread to shoulders - 2013 but then subsided in that same year. It now came back accompanied with neck stiffness in the throat/tongue area - 2017. I also get a very hoarse voice after I speak for a few hours.
- Through out all of this, my sleep has been unrefreshing and i always have a feeling of fatigue.
- Constant tongue fasciculations/rippling effect (2011-today)
- Progressive exercise intolerance (2008-today). I can still go skiing or play volleyball but i will get a lot of cramps and will be totally wiped the next day. Also, any exercise that causes my muscles to flex results in vigorous shaking.
- I have a numb spot in the middle of my back and above my knee where i cannot feel any pain or temperature.
One way to describe how i feel is similar to the stress/anxiety that someone experiences before a speech. When your muscles are tense, your legs/arms feel flabby/shaky. However, i feel like that all the time. And, that feeling has been getting worse and worse.
- Lastly, the past few months have been very tough. I noticed my arms being very weak although I can still do a few pushups but less than before. They simply feel shaky and I can see the shaking motion in my hands.
A bit about the tests/ medical appointments:
- CFS suggested in 2008 but dismissed by neuro
- MRI in 2009 revealed a small syrinx between c2-c3 (9mm long and 1.5mm in diameter) - neuro says it is asymptomatic and i always had it
- Rheumatology: diagnosed fibromyalgia but neuro dismissed it
- Muscular Neuro: did EMG/NCV in 2011 / 2013 / 2014. Did not notice anything abnormal. Only some fasciculations, normal recruitment, elevated activity upon insertion of the needle. I was told it was not ALS, which i was terrified about
- Biochem Neuro: did extensive bloodwork and did not notice anything that would suggest a metabolic neuromuscular issue
- Saw chronic lyme disease doctor. Put me on antibiotics for 3 months without any significant results. My igeneX test (western blot) was inconclusive although i have been travelling a lot to different areas of the world.
That's my story, i left out details believe it or not. It's been a long journey. If you have read this far and have some suggestions or relate to what i am going through, please let me know. This is obviously taking a toll on my family and I. I cannot get the fear of ALS out of my head and I believe this health anxiety is exacerbating a lot of my symptoms.
I don't want to offend anyone suffering of ALS with my fears of ALS. I am aware that this is a terrible disease and my thoughts and prayers are will everyone on this forum. I wanted to share this for others like me that are lost in the medical diagnosis system and are scared/concerned.
Thanks for reading.
Thank you for reading.
I got some personal messages about my status and thought of sharing with you. I am still freaking out over ALS by the way, which is not healthy at all...
I'm a 39 yr old man who has been experiencing ongoing neurological/muscle issues for the last 10 years. I will summarize the progression below and if anyone has some suggestions or can relate from personal experience, I would love to hear from you. I have not been given a definite diagnosis of anything as of yet. Below is my best recollection in chronological order of this journey:
- It started when I noticed a difference when biking, it simply became more difficult to do the same path as I had always taken to go to university - 2007
- At the same time, I noticed that i would always wake up fatigued with quads and thighs feeling as if i had ran the day before (which i hadn't) - 2007
- I saw a few doctors who didn't notice anything wrong, one suggested CFS and to wait it out. My symptoms never improved, after I move my legs for a while they get a bit better in terms of the stiffness/numbness going away. Since I was having headaches I was referred to a neurologist.
- In 2008, the neurologist did an mri and noticed a small syrinx at my c2-c3 level. It is a small sac inside my spinal cord that is 2mm wide and 9mm long. Apparently I was born like that and this is not the reason for any of these symptoms although opinions differ on that too.
- I waited for about 2 years and then in 2010 I decided to go to the gym to get in shape. After my first workout, all my back muscles became so stiff that i had all sorts of back pain for about 2 months
- Over time, i became more easily tired. Walking up stairs i get out of breath.
- Whenever i flex my muscles, they shake like crazy. I get all sorts of tremors when squatting, trying a plank, flexing biceps. noticed that in 2010/2011. It is still ongoing and is worst than before.
- Developed intense twitching body wide that is exacerbated by anxiety. Also noticed a muscle rippling effect under my skin when doing a squat, shoulder lifts, etc. - 2012 to today
- The weakness seems always proximal but stiffness develops after i use my hands or feet for an extended period of time. For example, after cleaning wheels of a car, my fingers are stiff like metal wires. After playing some soccer, my feet feel the same - notice in 2012/2013
- Feeling of heaviness spread to shoulders - 2013 but then subsided in that same year. It now came back accompanied with neck stiffness in the throat/tongue area - 2017. I also get a very hoarse voice after I speak for a few hours.
- Through out all of this, my sleep has been unrefreshing and i always have a feeling of fatigue.
- Constant tongue fasciculations/rippling effect (2011-today)
- Progressive exercise intolerance (2008-today). I can still go skiing or play volleyball but i will get a lot of cramps and will be totally wiped the next day. Also, any exercise that causes my muscles to flex results in vigorous shaking.
- I have a numb spot in the middle of my back and above my knee where i cannot feel any pain or temperature.
One way to describe how i feel is similar to the stress/anxiety that someone experiences before a speech. When your muscles are tense, your legs/arms feel flabby/shaky. However, i feel like that all the time. And, that feeling has been getting worse and worse.
- Lastly, the past few months have been very tough. I noticed my arms being very weak although I can still do a few pushups but less than before. They simply feel shaky and I can see the shaking motion in my hands.
A bit about the tests/ medical appointments:
- CFS suggested in 2008 but dismissed by neuro
- MRI in 2009 revealed a small syrinx between c2-c3 (9mm long and 1.5mm in diameter) - neuro says it is asymptomatic and i always had it
- Rheumatology: diagnosed fibromyalgia but neuro dismissed it
- Muscular Neuro: did EMG/NCV in 2011 / 2013 / 2014. Did not notice anything abnormal. Only some fasciculations, normal recruitment, elevated activity upon insertion of the needle. I was told it was not ALS, which i was terrified about
- Biochem Neuro: did extensive bloodwork and did not notice anything that would suggest a metabolic neuromuscular issue
- Saw chronic lyme disease doctor. Put me on antibiotics for 3 months without any significant results. My igeneX test (western blot) was inconclusive although i have been travelling a lot to different areas of the world.
That's my story, i left out details believe it or not. It's been a long journey. If you have read this far and have some suggestions or relate to what i am going through, please let me know. This is obviously taking a toll on my family and I. I cannot get the fear of ALS out of my head and I believe this health anxiety is exacerbating a lot of my symptoms.
I don't want to offend anyone suffering of ALS with my fears of ALS. I am aware that this is a terrible disease and my thoughts and prayers are will everyone on this forum. I wanted to share this for others like me that are lost in the medical diagnosis system and are scared/concerned.
Thanks for reading.
Thank you for reading.