Symptoms for the past year +, trunk dominant

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KMGB

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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...
 

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I have never heard of ALS onset or progression happening this way and I'm pretty sure you haven't read of another case like this in the reading you have done here (not one that turned out to be ALS).
I really hope they find some answers for you soon. Has a neuromuscular neurologist said they think this is ALS, or are you trying to figure things out for yourself? I can say that ALS does not turn off and back on again so I'd be really surprised.
 

lgelb

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No, this does not sound like ALS, whether young or older onset. Symptoms do not present, come or go as you've described. There's isn't a battery-type on/off for muscles. When the nerves are dead, they're dead. Waxing/waning is more characteristic of muscular dystrophy, but other conditions as well. Feelings of numbness, skin slipping off, missing soft tissue, etc. don't have any relationship. Beyond the neuromuscular possibilities, there are other potential issues such as poor sleep, which makes everything worse.

I'm glad you're booked in for an EMG. Since you've had one spine problem, it could certainly have unmasked or exacerbated another, so regardless of what the EMG shows, I would check in with whoever manages the spine issues to make sure you are up to date on imaging that. LBP/radiculopathy through most of your 20s suggests the need for close management. But I don't see any reason to worry about ALS.

Best,
Laurie
 

KMGB

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Many thanks to you, and to Laurie as well. The neurologist made an offhand remark about most people wanting to rule out ALS right away, but she didn't directly say that about my symptoms. I wish she hadn't even brought it up, but I'm sure that's why she ordered the EMG, after all...

Laurie, might I ask with regards to the MD where you've seen reports of waxing/waning? From one article I read about ALS there was mention of reinnervation/denervation that could come and go as neurons take over for others that have shut off. I'm mostly curious (grad student, bookworm) but I haven't seen any articles peer-reviewed or otherwise mentioning that kind of on/off pattern for MD. Much appreciated for any links or resources.
 

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ALS/MND as you know kills motor neurons that control voluntary motor function in [usually] a very widespread way. It's true that sometimes other muscles can "take over" function, like using abdominal muscles more for breathing when the chest weakens, but that usually doesn't last forever or work as well.

MD patients (most commonly, Duchenne) more often wax/wane since they can have muscles that are strong as well as others that are weak. And fatigue plays more of a role since they can usually do more. As you know, life expectancy is different, esp. with the newer agents on the market. And some muscles can be strengthened w/ exercise, not the case in ALS. In short, their strength is more variable on a day to day basis.
 
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