KMGB
New member
- Joined
- Jun 11, 2021
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MN
- City
- Saint Paul
Hello, and thank you so much for visiting the thread. I have been reading the forum for the past week or so, and I have learned so much from all the comments here already.
I have been suffering from slow muscle atrophy for over a year now, with a marked spike in rapidity around 8 months ago. I had been lifting heavy weights regularly for the last decade or so, and have had low back pain for much of my twenties though much of it was manageable and I had made great progress in fixing a disc issue relatively recently. My problems really started about a year ago when things started to stop working while I was lifting. In particular, I lost the ability to retract my shoulder blades and my abdominal wall became very weak. I spent almost a year in physical therapy with progressively worsening weakness/atrophy, and have lost a tremendous amount of muscle mass. I am not prone to panicking about such things, and figured it was due to postural imbalance and poor breathing mechanics, but none of this has gotten better despite my best efforts.
The weakness and atrophy continued in my shoulders, arms and pelvis before spreading down to my hips and quads, as well as my biceps and forearms. I noticed that when I would lift weights, or do bodyweight exercises my muscles wouldn't get sore, just my tendons or nerves, as if it was my joints doing all the lifting. A few weeks ago, I had a horrible panic when I went to bed and was repeatedly woken up by my body since I wasn't able to get enough air in while lying on my back. In short order, my accessory respiratory muscles and everything from the chest up just felt "turned off." I have a hard time describing it, I wouldn't say it was numbness so much as my muscles simply feeling like they weren't present, or like the skin was slipping off my head and face. I did have some mild visual blurring as well (quite mild). These symptoms subsided after several days, and my muscles seemed to return to a level of effectiveness back at their (very low) level that I had gotten used to after a year of progressive weakness and atrophy.
I went into the doctor right away, and had blood tests done that ruled out MG and did not suggest MD (CK levels were at the high end of normal). I am waiting on an EMG that is booked out a couple of months which is no fun. I haven't had fasciculations (that I'm aware of: I do have neuropathy from my herniated disc), but the progressive weakness and atrophy is continued, and alarming. My bowel movements have also become very infrequent and I have loose stool nearly every time. As I alluded to, my symptoms have been mostly proximal, and primarily affected my abdominal wall, shoulder girdle, and pelvis bilaterally and mostly symmetrically, though my right side has recently become weaker than the left. However, symptoms have spread distally, and generally encompass my whole body. As a 28 year old male, I am aware that I am not a likely candidate for ALS. However, this also makes me wonder if my symptoms may be expressed more slowly and in an unusual pattern, which it seems like can happen with younger people.
The main questions I have for someone here:
Does the proximal/bilateral onset tell me much about the chances of my having ALS? Is this more common with younger people?
Is it frequent that symptoms can come and go? (It's been a sort of 2 steps backwards, one step forwards pattern for over a year now)
Is there a reliable indication of the difference between MD and ALS of a more slow-onset variety? My symptoms accord more with MD I suppose, but I'm almost certain this is a neurological issue based on the way the muscles seem to "turn off" after occasionally coming back on for a bit.
Thank you so much for your time and any insight you can offer me, it is much appreciated...
I have been suffering from slow muscle atrophy for over a year now, with a marked spike in rapidity around 8 months ago. I had been lifting heavy weights regularly for the last decade or so, and have had low back pain for much of my twenties though much of it was manageable and I had made great progress in fixing a disc issue relatively recently. My problems really started about a year ago when things started to stop working while I was lifting. In particular, I lost the ability to retract my shoulder blades and my abdominal wall became very weak. I spent almost a year in physical therapy with progressively worsening weakness/atrophy, and have lost a tremendous amount of muscle mass. I am not prone to panicking about such things, and figured it was due to postural imbalance and poor breathing mechanics, but none of this has gotten better despite my best efforts.
The weakness and atrophy continued in my shoulders, arms and pelvis before spreading down to my hips and quads, as well as my biceps and forearms. I noticed that when I would lift weights, or do bodyweight exercises my muscles wouldn't get sore, just my tendons or nerves, as if it was my joints doing all the lifting. A few weeks ago, I had a horrible panic when I went to bed and was repeatedly woken up by my body since I wasn't able to get enough air in while lying on my back. In short order, my accessory respiratory muscles and everything from the chest up just felt "turned off." I have a hard time describing it, I wouldn't say it was numbness so much as my muscles simply feeling like they weren't present, or like the skin was slipping off my head and face. I did have some mild visual blurring as well (quite mild). These symptoms subsided after several days, and my muscles seemed to return to a level of effectiveness back at their (very low) level that I had gotten used to after a year of progressive weakness and atrophy.
I went into the doctor right away, and had blood tests done that ruled out MG and did not suggest MD (CK levels were at the high end of normal). I am waiting on an EMG that is booked out a couple of months which is no fun. I haven't had fasciculations (that I'm aware of: I do have neuropathy from my herniated disc), but the progressive weakness and atrophy is continued, and alarming. My bowel movements have also become very infrequent and I have loose stool nearly every time. As I alluded to, my symptoms have been mostly proximal, and primarily affected my abdominal wall, shoulder girdle, and pelvis bilaterally and mostly symmetrically, though my right side has recently become weaker than the left. However, symptoms have spread distally, and generally encompass my whole body. As a 28 year old male, I am aware that I am not a likely candidate for ALS. However, this also makes me wonder if my symptoms may be expressed more slowly and in an unusual pattern, which it seems like can happen with younger people.
The main questions I have for someone here:
Does the proximal/bilateral onset tell me much about the chances of my having ALS? Is this more common with younger people?
Is it frequent that symptoms can come and go? (It's been a sort of 2 steps backwards, one step forwards pattern for over a year now)
Is there a reliable indication of the difference between MD and ALS of a more slow-onset variety? My symptoms accord more with MD I suppose, but I'm almost certain this is a neurological issue based on the way the muscles seem to "turn off" after occasionally coming back on for a bit.
Thank you so much for your time and any insight you can offer me, it is much appreciated...