Is this ALS?

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Kmars914

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So to start I’m incredibly sorry if I’m wasting anyone’s time. However I have received some weird news from my Neurologist and not entirely sure what to expect. So last year I went to a Neuro in regards to some muscle twitching I had going on. However after labs, EmG and physical assessment done everything came back ok and I went on without concern. However recently (approx 1 year later) I noticed that the muscle twitching had returned and I had some odd annunciation problems. I went to my regular doctor did some labs which received high bilirubin and she then sent me to a neurologist. After doing some labs I had multiple high levels come back most of which being my CPK being in the thousands approximately 14000. Along with this my liver enzymes are high and my B12 is 190. He said I need to see an ALS specialist. My question is this. Although I know it will take multiple specialist to figure out what’s going on. Is my blood results common with that and ALS? I don’t have any clinical weakness in fact I’m above average strength in my workouts in terms of overall strength and stamina. My problems with speech are not noticeable to others and I have no problems chewing or swallowing. I’m just wondering if what I mentioned seems consistent with that of ALS? I know no one here can diagnose I just wanted to know if I’m presenting early? I’m only 29 years old white male.
 

affected

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Blood results common for ALS? No
No clinical weakness - great news
Speech problems only you notice - great news, it's the opposite with ALS.

Definitely keep working with your doctors and stay open to this being something far less sinister. Even in early stages this is not how ALS presents.
 

Nikki J

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Agree it doesn’t indicate ALS were you evaluated clinically for the cpk? Did they repeat it? That is very high and whatever is causing it could be causing the lft issue certainly and other lab abnormalities. I think the person who referred you was not thinking ALS but some kind of primary muscle disease. Someone should be assessing you now though.
 

Kmars914

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so when I was evaluated it was mainly for the muscle twitches and the slurring of the words. I guess I’m doing do diligence it’s why the CPK was measured which obviously came back extremely high. Also my SGPT, SGOT, Folate and bili total were also extremely high. I’m not sure if any of these or indicative of muscle wasting or ALS? I know im referencing these things to ALS just because he’s sending me to that clinic to have a muscle biopsy and EMG done. He seemed very worried so im alittle upset. Also I live in the NY area and none of the clinics have openings, any ideas on how I can be seen faster?
 

Nikki J

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They are not thinking ALS. They are thinking a myopathy as I said.

Do you drink alcohol? Was your thyroid tested? Kidney function? Anemia? call your pcp and have them look everything over and perhaps repeat some labs.

as far as getting appointments sooner you can ask to be on a cancel list. If it is true that you can get there at short notice tell them that.
 

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You would be seen faster if they truly thought you had a terminal disease, but you don't present with an indication of one.
Those blood tests are not indicating a disease that starts in the brain and spinal cord, but a muscle issue as Nikki has said.
Please ask your doctor to help you work through coping with the waiting time as looking after yourself well now is truly important.
 

Kmars914

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Ok so some interesting news came out. So last week on Thursday I had my annual physical and ran all labs except the CPK. The day after my physical is when I saw the neurologist and ran the labs with him that came back with the high CPK. After I had spoke to the neurologist I reach out to my primary care physician to tell her what had happened, not only was she shocked but she was thrown off because the labs I ran with her had come back squeaky clean. So with her my AST/ALT we’re in the low 20’s burg with the neuro they were 300/100 something. So long story short I reran the labs both came in high but lower than before so I’m trying to see what could cause my CPK and Liver enzymes to spike so hard in 24hours.

Anyhow just wanted to share and also had some questions I just wanted clarification on because of the drastic amount of misinformation. 1. Is it true that if you can feel twitches they’re benign and if you can’t they’re dangerous? 2. Can twitches in the tongue be benign or are they always related to ALS? 3. Would a male 30 or younger getting bulbar onset be practically unheard of or is it more common than related? As always I appreciate both your time and energy, I apologize I’m a novice with this information and just want clarification on some of the facts. Thank you both very much
 
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affected

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We are not doctors here but we know ALS.
So to your true questions:
1. no twitching means nothing regardless if you feel them or not
2. see no. 1
3. ALS is rare, ALS in someone under 30 is the rare of the rare.

Please discuss your concerns with your doctor further, ALS will not cause wildly changing lab results such as yours it is a disease of the brain and spinal cord.
 
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