Shortness of breath and fasciculations

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warrenpk99

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Hi all, hoping to get some advice here. I've had shortness of breath at rest/exertion with widespread fasciculations including in my chest/abdomen area for over 8 months now. I also have rather constant right hand pain and I think some loss of muscle between my fingers creating depression. My recent ABG test showed high Co2 levels in the morning and same in the blood work I have had run. Im only 35 and have no heart issues; I was told I have normal PFT but low MVV and tidal volumes. My MIP was -110 and MEP +120 recently. I just went to a ALS Center here in Texas and they said the exam was normal and the EMG was also normal and tested everywhere including quite a few back muscles. In your opinion could this be ALS? Neuro was quite confused with the widespread fasciculations and not sure where to turn next. Ive had lots of autoimmune, paraneoplastic, and bloodwork done without any abnormalities.
 

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Hi Warren,
sounds like you have a lot going on there, it must be scary.
There is nothing at all that sounds even remotely like ALS, and I think the ALS centre sounded certain of that too.
We only deal with ALS here, so can't really help you further, but I do hope that your doctors can figure things out with you soon and get you back to health.
 

lgelb

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The MVV is not widely used for good reason, so I would discount that. If you post your "tidal volumes" (applicable to a given test), we could be more helpful. But if the ALS center said your EMG and exam were normal, it would be hard to worry about ALS.

However, if you feel tired in the morning regardless of sleep and/or have involuntary movements near sleep, a sleep study might not be a bad idea. If your lung volume is not what it should be, a pulmonologist might want to order a lung CT to detect any disease behind that. For right hand pain, if that is your dominant hand, we would usually consider ergonomics, keyboarding and texting first.

As you will have read here fascics in themselves are not of concern, and localized pain does not relate to ALS onset.

The good news -- there is nothing in your story that suggests the ALS center's lack of concern is unfounded.

Best,
Laurie
 

warrenpk99

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Thanks for your time affected and Laurie.

Regarding tidal volumes, my exercise test said: "Abnormal exercise test with mildly reduced peak VO2. Reduced tidal volumes of 65% predicted were seen. Given the normal dead space ventilation and breathing reserve, the mechanism may be neuromuscular. A mildly reduced peak O2 pulse and AT were also seen as can be seen in the setting of poor oxygen extraction/utilization".

I did have sleep apnea and am using Auto CPAP machine now. CT was normal. Im fairly confident this is not limb or bulbar onset given the time that has passed (approaching a year soon) without weakness and clean EMG. I guess respiratory onset is what concerns me the most though I know this is extremely rare especially at 35y/o; given I have twitching I assume the EMG would have shown abnormalities in the thoracic region and that my MIP/MEP values wouldn't be the levels I noted earlier (-110/+120) after a year of respiratory ALS. I haven't lost any weight.

The shortness of breath started at rest and I guess the fasciculations brought me here. Maybe I need to pursue Mitochondrial testing or other chest wall disorders given low tidal volumes at rest; and this just started out of the blue one day. I appreciate your responses and opinion.
 

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All tests have to be interpreted within the overall clinical context. A test alone seldom gives a diagnosis unless it is a biopsy. The fact that your physical exam was normal and EMG was normal including back muscles rules out ALS. And those MIP and MEP values being normal is in your favor.
 

warrenpk99

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Would appreciate your advice on my muscle biopsy results that I was sent today - I don't see the neuro for another month and just so confused. The findings say: "ATP stains reveal a slight predominance of type II myofibers; a loss of randomness in the distribution is present in two areas but no evidence of fiber type grouping in other areas. The esterase stain highlts of sarcoplasm of a solitary, angular, mildly atrophic myofiber without other neuropathic changes".

I know I need to see the doctor to interpret but I am so nervous based on this. My understanding is that loss of randomness and atrophic myofibers is classic denervation/renervation related to ALS. Maybe it is just too soon for the EMG to pick it up since renervation is still ongoing? Thanks for the advice, this is all so new to me.
 

KarenNWendyn

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You can’t diagnose ALS from a muscle biopsy, especially when your EMG was normal and therefore did not show denervation. The main indication for your muscle biopsy would be to evaluate for other causes of your symptoms. As I said before, all tests have to be interpreted within the overall clinical context. Wait to see your doctor to put it all together for you.

Keep in mind that what is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics.
 

Bigshawn44

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I have had similar symptoms in my early phases. My best advice I can possibly give is listen to your body as you know what’s normal or not. I have had a wide array of drs tell me many different sides of being als and not als. If I was not persistent with knowing something was wrong I would not have gotten my answers. I was told by 1 neurologist that I had als then referred me to another which said I was fine just had benign twitching from working out so much. I was then referred to the ALS center which at first had bad experience. The dr walked in and without doing any tests she said u don’t have anything wrong and not to worry. I was shocked that a dr could look at you without any test or any exams she could tell me that. While she was examining me she dismissed everything I said by saying it was acid reflux or benign twitching. So after about 2 weeks I requested a new als dr that was very knowledgeable and took the care to listen to me as a patient. She performed another EMG and then a muscle biopsy to find out that I have progressive muscle atrophy PMA.

So if I can give any advice it would be listen to your body and if u don’t like what you hear then maybe u need to find someone that listens to you. Too many drs judge by looking at you and not listening. I am 210lbs and very muscular. So to most drs they don’t want to diagnose you until you are so far advanced that you don’t have time to live while u can and prepare for what’s to come. I hope yours is nothing to worry about but you know your body.
 

warrenpk99

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Thanks Bigshawn. How long did it take for you to have an abnormal EMG? I am coming up on a year with clean EMG still, done by ALS center. The biopsy was called non-specific with no clinical meaning.
 

KarenNWendyn

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Warrenpk, if your EMG was clean a year ago and your biopsy nonspecific and your physical exam was normal, you can’t make ALS out of this no matter how hard you try. By all means, keep working with your neurologist trying to get to the bottom of this. But it’s not ALS.
 
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