Matt21
Member
- Joined
- Aug 8, 2011
- Messages
- 20
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- ON
- City
- Toronto
Hello everyone, I have stayed off this forum for a while as I do not have an ALS diagnosis and I wanted to avoid being disrespectful by bringing up conditions that probably don’t scratch the surface of what some of you are going through. However, I was exchanging a number of visitor messages with other members and it occurred to me that there may be others that are undiagnosed who could be interested in this update … so here it goes:
I am a 38 year old man that has been having health concerns for 7 years now. My symptoms can be summarized as follows:
-Muscle stiffness that is worse in the morning and eases up as I move but never goes away
-Disturbed gait / walking, some issues keeping balance
-Random Body-wide fasciculations and twitches
-Strong fasciculations / muscle rippling when contracting a muscle (body wide)
-Intense tremors in neck and shoulder area when lifting above head
-Extreme core shaking when doing any exercise like a sit-up or push-up
-Joint stiffness and pain, some muscle pain in legs, constant back pain and stiffness
-Loss of muscle mass in both ankles (very thinned out)
-Constant fatigue, cannot get better with sleep, cramps
-Muscles “feel tired” all the time as if I over used them
-Neck stiffness and jaw/tongue cramps
-Bouts of Anxiety and depression brought by this “in limbo” situation.
I’ve been able to keep my job so far but I have severe exercise intolerance and things that were once “light” now feel “heavy”. For instance, my laptop bag carried over my shoulder will feel a lot heavier and will make my arm drained and flabby after I carry the laptop for 20-30 minutes. Standing up the entire day will completely drain me and last time I had strange “core body cramps”
Things have not been stable, it all started with slight fatigue and leg discomfort and has progressed to a much more pronounced discomfort and fatigue over 7 years. New twitches developed, exercise intolerance increased, muscle tremors (dystonia I believe it is) is much more prevalent in more muscle groups.
So I am on this forum again, worried that it could be a slow progression of ALS. Trying to see if others that are undiagnosed have found some ways to cope with their symptoms or found anything that improves their condition. One of my good friend’s wife lost her father to ALS and you can see concern all over their face when I tell them my story… it scares me a lot.
I have had many tests: Full blood test including (standard tests and then some: vitamins, electrolytes, MG – Antibody, etc…), MRI of spine, seen by neurologist 3 times, seen by 1 neuromuscular neurologist who performed an EMG (2014), 1 neuromuscular and neurometabolic expert who performed an EMG in 2012 and found some re-innervation and noticed one fasic – other than that it was normal.
List of potential diagnoses that I got: 2009 – CFS, 2011 – Idiopathic Syringomelia (8mm syrinx at C2), 2012 – Chronic Lyme disease (doc in US), 2014 – Fibromyalgia or BFS . My neuro, who is the type with lots of grey hair doesn’t believe that any of these conditions could be causing my symptoms and is trying to figure this out.
So here are my questions:
Does this sound like it could be a slow progressing ALS?
Based on your experience with various conditions and tests, any suggestions as to what else I might want to look at? Muscle biopsy? Spinal tap?
Thank you for reading. Your help and advice is extremely appreciated.
Matt
I am a 38 year old man that has been having health concerns for 7 years now. My symptoms can be summarized as follows:
-Muscle stiffness that is worse in the morning and eases up as I move but never goes away
-Disturbed gait / walking, some issues keeping balance
-Random Body-wide fasciculations and twitches
-Strong fasciculations / muscle rippling when contracting a muscle (body wide)
-Intense tremors in neck and shoulder area when lifting above head
-Extreme core shaking when doing any exercise like a sit-up or push-up
-Joint stiffness and pain, some muscle pain in legs, constant back pain and stiffness
-Loss of muscle mass in both ankles (very thinned out)
-Constant fatigue, cannot get better with sleep, cramps
-Muscles “feel tired” all the time as if I over used them
-Neck stiffness and jaw/tongue cramps
-Bouts of Anxiety and depression brought by this “in limbo” situation.
I’ve been able to keep my job so far but I have severe exercise intolerance and things that were once “light” now feel “heavy”. For instance, my laptop bag carried over my shoulder will feel a lot heavier and will make my arm drained and flabby after I carry the laptop for 20-30 minutes. Standing up the entire day will completely drain me and last time I had strange “core body cramps”
Things have not been stable, it all started with slight fatigue and leg discomfort and has progressed to a much more pronounced discomfort and fatigue over 7 years. New twitches developed, exercise intolerance increased, muscle tremors (dystonia I believe it is) is much more prevalent in more muscle groups.
So I am on this forum again, worried that it could be a slow progression of ALS. Trying to see if others that are undiagnosed have found some ways to cope with their symptoms or found anything that improves their condition. One of my good friend’s wife lost her father to ALS and you can see concern all over their face when I tell them my story… it scares me a lot.
I have had many tests: Full blood test including (standard tests and then some: vitamins, electrolytes, MG – Antibody, etc…), MRI of spine, seen by neurologist 3 times, seen by 1 neuromuscular neurologist who performed an EMG (2014), 1 neuromuscular and neurometabolic expert who performed an EMG in 2012 and found some re-innervation and noticed one fasic – other than that it was normal.
List of potential diagnoses that I got: 2009 – CFS, 2011 – Idiopathic Syringomelia (8mm syrinx at C2), 2012 – Chronic Lyme disease (doc in US), 2014 – Fibromyalgia or BFS . My neuro, who is the type with lots of grey hair doesn’t believe that any of these conditions could be causing my symptoms and is trying to figure this out.
So here are my questions:
Does this sound like it could be a slow progressing ALS?
Based on your experience with various conditions and tests, any suggestions as to what else I might want to look at? Muscle biopsy? Spinal tap?
Thank you for reading. Your help and advice is extremely appreciated.
Matt