Thank you in advance

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I want to thank you all in advance, and let you know that I will not dispute your suggestion (and only welcome it) if you don't think ALS is a possibility in my case. I also want to let you know that my thoughts are with each of you that have been diagnosed or have had a family member diagnosed. You all are truly an inspiration, and the fact that you take the time to talk with others who believe they may have symptoms is extraordinarily kind and generous.

I'm a 31 y/o male. An exhaustive timeline of my potential symptoms follows:
* I've been feeling fatigued for about a year now without explanation, and it's gotten worse in recent months. 2 weeks ago, my doctor realized I have a vitamin D deficiency (13mg/l) and I've been feeling a bit better with treatment (thankfully one bright spot).
* 3 months ago or so, I noticed some surprising awkwardness/weakness when walking down the stairs and also had trouble in my right hand/wrist after holding a leaf blower for 30min
* 2.5 months ago, I started having perceived tightness when breathing and pains in the front right of my chest and upper back when breathing. Saw a pulmonologist, who after an x-ray and CT suggested the pains were musculoskeletal. This has persisted to today. I've also had an echocardiogram that didn't present any major issues.
* A little more than a month ago I was in the hospital for a week with a pretty severe case of what is believed to be exertional rhabdomyolysis after exercise (>100k CK level). The impacted body parts were my upper arms due to weight lifting.
* After leaving the hospital and to this day, my right ankle and calf felt weaker/stiffer and there's been a couple of times my balance felt off. The next day, my right calf began to fasciculate, and shortly after that my right foot did as well. The twitching happens pretty consistently throughout the day and when I wake at night.
* In recent weeks I've developed soreness in my calf muscle - the twitching is still 95% in the right leg (now foot, ankle, calf, thighs, and butt) but has also extended to my arms, the other leg, and right abdomen (including the diaghram) almost every day
* More alarmingly, I've had twitching in the muscle between my finger and thumb every couple of days, after soreness and stiffness of that same muscle. This muscle was also not involved in my rhabdomyolysis case.

I understand I haven't described any symptoms that qualify directly as clinical weakness or severe cramping, but I'm still alarmed by the symptoms. It's difficult to say which of them are related, or which of them could be ALS. I am still able to walk on my heels/toes, button my shirt, and open containers. What worries me most is the "sidedness" of my symptoms, locations of the symptoms, and possible progression. I do have a neurological appointment in a couple of weeks.

My question basically is - does anyone believe any of this sounds like early onset of ALS? Could my rhabdomyolysis have triggered or uncovered ALS?

Thanks again, you all are so selfless to respond to our inquiries.

 

[lgelb]

I think you have this backward. Vitamin D deficiency is associated with rhabdo risk and myopathy (which could account for how your muscles have been acting up). But assuming you spend some time outdoors, the question is why you were deficient to begin with, assuming you have been screened for celiac, Crohn's and don't have CF. For example, I would make sure you have had kidney function tests, calcium, PTH and the like. Our resident rheumatologist may have other suggestions.

If you maintain the vitamin D level and don't have underlying issues that caused it, I suspect you will feel better soon. You haven't presented any reason to worry about ALS.

Best,
Laurie

 

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Hi Laurie,

Thank you very much for your reassuring and detailed response. You've given me very good ideas for following up with a rheumatologist - especially around Celiac, Crohns, CF, and other myopothies (many of which I don't believe has been tested for). I have had kidney function, calcium, magnesium, iron, potassium, and PTH tests in the hospital, all of which were normal.

Again, thanks so much for taking the time to reply. It's been very lonely with these symptoms - the hospital wanted to fix the symptom and just send me home, and I've unfortunately had to fight with my GP to see any specialists. Your guidance is very helpful in my journey to diagnosis.

 

[KarenNWendyn]

Yes, you need to be evaluated for myopathies and connective tissue diseases. Sometimes rhabdomyolysis is really a myopathy. Your story is more along those lines and not along ALS/ MND lines. It would be helpful to check in with a rheumatologist.

Best of luck,

 

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Quick update - I saw a neurologist and he did find brisk reflexes but no clinical weakness. He didn't say whether the reflexes were asymmetric and I didn't know to ask at the time.

I'll be having an EMG on Tuesday, a follow-up on Thursday, and an MRI once approved by insurance. He's also done a ton of blood tests, and noted that my B12 was on the low end of the normal range in a previous test.

He suggested that nerve inflammation (something like MS?) is more likely due to the speed of onset of my symptoms. He wouldn't rule ALS out, and didn't even mention BFS/anxiety as a possibility.

My current fear is that I'm seeing progression of respiratory ALS, given my prior symptoms. I know it's not diagnosed until it's diagnosed, but I just can't help feeling like I'm zeroing in on something. Not really looking for answers, just didn't know who to tell or who might understand.

 

[Atsugi]

Nope. I say no ALS.
That's three of us.
Plus, when your doctor didn't want to send you to a specialist, they're saying "no ALS," too.

 

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I'd like to close the loop on this. I had my EMG performed today and the doctor was able to give me the results immediately. As you all predicted the EMG was clean, and it additionally didn't indicate a myopathy. I'd like to thank Laurie, Karen, and Mike for your thoughtful responses. I am making a donation today to the ALS Association in your names and wish you all the best. You have truly been an inspiration and gave me hope in a very dark time -- I will never forget your kindness. I pray for a cure and hold this community in the highest regard. Thank you.