What are your thoughts on these symptoms?

[james1974]

Hey everyone,

I've done a tremendous amount of reading on this forum. I'm fairly confident my symptoms DON'T line up with ALS, but was looking for some reassurance as my neurology appointment is a few months.

I will provide all information in point form with some words capitalized as I think they may be important:

- 42 year old male

- 2.5 years ago I noticed some tightness in my chest. I have asthma. Regular medication didn't provide any relief. Doctors sent me for multiple heart tracing and lung function testing. Nothing came back abnormal.

- 2 years ago BOTH of my legs started feeling weak around the same time. Probably within a few days of one another. All day and night they felt as if I had run a marathon. I felt weak after walking up stairs.

- 1 year ago, I was washing my car and noticed my right arm felt weak from holding the spray wand.

- 2 months ago, BOTH of my arms started feeling weak. Starting in my shoulders, down my arms. My fingers on BOTH hands felt stiff and tight. I have definitely lost some motor function in my left hand. If I try to lift a 10 pound weight and walk around with it, my biceps in BOTH arms are burning like crazy.

- I am getting muscle twitching in BOTH legs (calves, hamstrings, quads) along with twitching in BOTH arms (biceps, triceps and forearms). This twitching will start in a muscle in one leg and go for a few hours, then stop and a different muscle in a different leg or arm will start and continue the same pattern.

- Both arms are very weak. I noticed I have some difficulty typing as my fingers on BOTH hands feel very clumsy

- BOTH legs have very tight muscles. They hurt to push on them. There are lots of knots in them.

- I've got major fatigue and brain fog. By 2pm each day I'm falling asleep at my desk.

This prompted me to visit my primary care doctor. He ran a blood test and my CK (Creatine Kinase) level was 590. Normal levels are below 200.

So, this shows that I'm getting some muscle damage. My primary care physician has referred me to an internist. The internist should be seeing me in the next few weeks but has also send my file over to neurology to see if they have any interest in seeing me first.

Based on all of the reading I've done on this forum, here is why I DON'T think these are ALS symptoms:

1) Started in BOTH legs right around the same time and started in the hamstrings and quads feeling weak. I don't have any noticeable weakness in my feet

2) Started in BOTH arms roughly around the same time. I feel more burning in the shoulders and biceps. Although I have lost some motor function in my fingers on BOTH hands, it didn't seem to start in a finger (like I've read on this forum) and work it's way up

3) Even though my legs have been weak coming up on 2 years, I don't have any type of foot drop. I know what foot drop feels like as I had a L4/L5 lumbar fusion 7 years ago and didn't experience foot drop and know what's it's like to have a "dead foot". This doesn't feel like that at all and feels more like weakness and burning vs the "dead" feeling. For what's it's worth, these leg symptoms are not related to my prior surgery as I'm in a part of a clinical trial and get an MRI once a year and see my surgeon twice a year. As of 4 months ago, my MRI showed nothing that would indicated these weak legs.


Here is why I've got a nagging worry that there are some ALS similarities:

1) the weakness came first, then the muscle twitches (which seems to be common based on what I've read on the forums)

2) I do have loss of motor function. the left hand is more noticeable, but I'm left handed. I definitely feel like the right hand has some clumsiness as well.

3) the final reason is because I came on this site and started reading, which I shouldn't have done. Some of my symptoms line up. The way they came on don't but I was hoping to get some input from the experts on here.

There is definitely something going on. This wasn't' brought on by stress. My CK tests shows there is something not right. There are lots and lots of other diseases (mainly autoimmune like polymyositis etc) that seem to line up more with how I'm feeling.

I like to think of myself as a "critical thinker", but sometimes it's hard to think rationally when there are changes like this happening in the body.

Any input or thoughts would be greatly appreciated.

James

 

[Atsugi]

You're right to say there's no ALS, there. Even in your "loss of motor function," it is accompanied by feeling weak.

ALS is a brain disease. The nerves in the brain are destroyed so they no longer tell the muscles to contract. Since the muscle isn't doing any work, there is no feeling of weakness, no burning, no heaviness, no weird feeling, no nothing. That muscle simply does not do its job.

The onset of ALS does not involve overall tiredness and brain fog, either. I don't know what is attacking you; it could be a simple diet and exercise problem, but it's certainly not ALS.

 

[lgelb]

James,

You have great insight into why this almost certainly isn't ALS. As you note, other differentials include immune-mediated disorders, including myopathy, and I would add adult-onset muscular dystrophy, mitochondrial myopathy, etc. I would make sure you have shared all medications/substances you ingest with your internist as some can cause muscle breakdown.

Do stop back by when you have an answer, as I am sure others would be interested.

Best,
Laurie