Gretz
Member
- Joined
- Apr 26, 2018
- Messages
- 10
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Belleville
Hello. I would like to start by stating my true admiration for all on this forum. You are all so courageous and inspiring. Thank you for sharing your valued thoughts and perspectives.
I am very worried about having als. Here is my story. I have twitched intermittently for years. In April I started twitching more regularly in all parts of my body with some focal twitching in my left hand just below my little finger. The ADM muscle. I went to my gp and because I was concerned, he referred my to a neurologist. The neuro did a clinical exam and said no weakness, therefore, no als. He would not send me for an emg.
I wanted a second opinion and saw another neurologist who did a clinical exam and an emg on both hands. It was clean.
About this time, 4 weeks into my worry, I began to feel my tongue was weak and my voice was getting soft. My lips did not seem to seal as well but no dripping or leaking. I cough and clear my throat a few minutes after I eat. No choking. Though I don’t slur I feel the words are a bit jumbled at times. Seems like my mouth is a bit slow. No one has mentioned it to me and my family says I sound perfectly normal.
Went to see another neuro. Neuromuscular specialist. Said the clinical exam was totally normal. Good tongue bulk. No Fasciculations, normal strength. Can move it well back and forth though in my mouth it seems less mobile when clearing food from the back of my mouth. This neuro performed an emg on all four limbs, paraspinals and trapezius. He said the neck is dangerous to emg and there really is no reason to based on my clinical exam. Said the trap is innervated partially by the cranial nerve and is a fine alternative to the neck emg.
I have since felt that I have a weakening neck that fits smaller in my dress shirts. In all of my exams with the neuros, neck strength was normal. Very strong in fact. I really feel it is getting smaller. I have a stiff and sore neck over the last three weeks or so.
The last issue but most bothersome to me is that I have developed significant exercise intolerance. I sweat more and my legs feel very wobbly after just riding the bike. I used to be able to ride for 2 hours. Now just 45 minutes and my legs feel very weak and wobbly. My heart rate increases very quickly. No doctor has been able to explain why I have detrained so rapidly in three months. Walking for a half hour is now a work out.
I do have twitching in my chest, stomach, back, legs, arms. I feel like I have lost muscle in my lower back and it seems weaker in my daily movements. I also have developed heat intolerance and sweat more even when not working out. Heard that the autonomic nervous system can be involved but not usually until later in the disease process.
So, over the last three months, many neuro appts and clinical exams. Emg full body, not bulbar. All neuros including a neuromuscular specialist has said no ALS. But my body seems to be saying otherwise. Exercise intolerance, neck atrophy and stiffness, some throat clearing and some perceived speech issues. Fatigue is greater and arms seem weak and stiffer.
Please share your thoughts. I am so convinced that I have ALS. Have read many accounts of the diagnosis process taking time and that it takes time for clear symtoms to present. Also, doctors sometimes miss it because it can be so elusive.
Thank you for your time and thoughts.
I am very worried about having als. Here is my story. I have twitched intermittently for years. In April I started twitching more regularly in all parts of my body with some focal twitching in my left hand just below my little finger. The ADM muscle. I went to my gp and because I was concerned, he referred my to a neurologist. The neuro did a clinical exam and said no weakness, therefore, no als. He would not send me for an emg.
I wanted a second opinion and saw another neurologist who did a clinical exam and an emg on both hands. It was clean.
About this time, 4 weeks into my worry, I began to feel my tongue was weak and my voice was getting soft. My lips did not seem to seal as well but no dripping or leaking. I cough and clear my throat a few minutes after I eat. No choking. Though I don’t slur I feel the words are a bit jumbled at times. Seems like my mouth is a bit slow. No one has mentioned it to me and my family says I sound perfectly normal.
Went to see another neuro. Neuromuscular specialist. Said the clinical exam was totally normal. Good tongue bulk. No Fasciculations, normal strength. Can move it well back and forth though in my mouth it seems less mobile when clearing food from the back of my mouth. This neuro performed an emg on all four limbs, paraspinals and trapezius. He said the neck is dangerous to emg and there really is no reason to based on my clinical exam. Said the trap is innervated partially by the cranial nerve and is a fine alternative to the neck emg.
I have since felt that I have a weakening neck that fits smaller in my dress shirts. In all of my exams with the neuros, neck strength was normal. Very strong in fact. I really feel it is getting smaller. I have a stiff and sore neck over the last three weeks or so.
The last issue but most bothersome to me is that I have developed significant exercise intolerance. I sweat more and my legs feel very wobbly after just riding the bike. I used to be able to ride for 2 hours. Now just 45 minutes and my legs feel very weak and wobbly. My heart rate increases very quickly. No doctor has been able to explain why I have detrained so rapidly in three months. Walking for a half hour is now a work out.
I do have twitching in my chest, stomach, back, legs, arms. I feel like I have lost muscle in my lower back and it seems weaker in my daily movements. I also have developed heat intolerance and sweat more even when not working out. Heard that the autonomic nervous system can be involved but not usually until later in the disease process.
So, over the last three months, many neuro appts and clinical exams. Emg full body, not bulbar. All neuros including a neuromuscular specialist has said no ALS. But my body seems to be saying otherwise. Exercise intolerance, neck atrophy and stiffness, some throat clearing and some perceived speech issues. Fatigue is greater and arms seem weak and stiffer.
Please share your thoughts. I am so convinced that I have ALS. Have read many accounts of the diagnosis process taking time and that it takes time for clear symtoms to present. Also, doctors sometimes miss it because it can be so elusive.
Thank you for your time and thoughts.