Symptoms of respiratory onset ALS?

Sue

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Hi everyone,

I'm new at this forum and would love to hear your thoughts/advice on my condition. Firstly, excuse my English since I'm not a native speaker.

My biggest issue is my dyspnea while talking/eating/doing some daily activities and of course during exertion. I feel like I need to take a more deep breaths, more often than usual. I have muscle twiches all over my body but mostly on my legs and feet. Today I saw some on my tongue.

I've seen 4 neurologists so far, they did 4 EMGs and Nerve Conduction studies, which showed nothing except for ischemic and hypervetilation tetany. However, during all those EMGs I haven't had any fasciculations in tested muscles /only legs and arms/.

For the last 3 months my FVC lowered from 112% to 108% and now it is 89%. FEV1 is borderline an also MIP/MEP (maximum inspiratory and expiratory pressure) were bad. Pulmonologist found a minor obstruction in peripheral airways and gave me bronchodilator, after few minutes I blew into diffuser and my FEV1, MIP and MEP got better but not enough to be categorized as asthma. Although, I have used bronchodilator at home for some time it didn't help me with my dyspnea. I also gasp for the air during night and have to sleep in an elevated position with two pillows because I it's hard for me to breath in supine position. When I'm in swimming pool and the water is up to my neck, I have a similar problem with breathing.

My heart is fine, blood ok also CK creatine kinase is normal. Neurologist just pumps me up with Magnesium, which is of no help. My muscle fasciculations started 4 months ago in my buttock and after 2 months spread into my both legs, arms, belly, face, eyelids, tongue, neck and I feel my eardrums twiching. Muscle fasciculations are 24/7 mostly in my right foot and calves but sporadic, like I can feel some of them at multiple places simultaneously. My buttock's twiches is sometimes just once a day and my eyelid twiches for few days, then stopped then started again. When I move my muscle, they disappear and when I relax they are back. When I walk a lot they are more pronounced in my legs and fire like crazy.

What also puzzles me is the numbness that comes very quickly if any part of my body is under slight pressure (when I sit on a chair only for half a minute my buttock and both legs go numb - pins and needles sensation/ or when I'm holding my phone in one hand it starts getting numb from my palm upwards). As to the buzzing/vibrating feeling in my legs and hands, this is a new symptoms and my neurologist doesn't know what that could be.

I'm sorry for such a long post and thank you all who will read it until the end. I'm in desperate situation since I have a beautiful 5yo son and it is hard for me to even talk to him, since I need to breath like crazy.

My uncle died of ALS after 11 years of fighting this year in May, and I'm very scared I might have it (we were not blood related) with respiratory onset. I live like I'm somewhere on the other planet, because I can't think of anything else except this disease.

I would really, really appreciate your feedback of there is anyone who can relate to my symptoms.

Thank you
 
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KarenNWendyn

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I’m sorry for the loss of your uncle. It makes sense that ALS would be on your mind.

Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

I am not sure of what to make of “ischemic and hypervetilation tetany” except it’s not something that goes along with ALS. Neither does the numbness that you report.

Did any of your EMGs test the thoracic muscles? Those would be abnormal if you had ALS with respiratory onset. With ALS, EMG changes tend to be widespread by the time a person first notices symptoms, so even if only the limbs are tested and come out normal, that is generally sufficient to rule out ALS.

Twitching is common, nonspecific, and meaningless. It doesn’t matter where the twitching is, how often you twitch, or if it occurs in muscles that are moving or relaxed. Twitching is actually one of the least important symptoms when it comes to diagnosing ALS.

I would have to say that since you’ve seen 4 neurologists and have had 4 normal EMGs, it’s not likely you have ALS.

Your PFT numbers are not diagnostic of ALS. I don’t have an explanation for you there except to keep working with your doctors. My FVC is in the 50s, and I can breathe while supine without feeling short of breath. I really think there is some other explanation for your symptoms.
 

lgelb

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Twitching more with effort with substantively normal EMGs suggests that with changes such as a better balanced electrolyte mix in your diet or more water every day, you could feel better. It is something to try. Not all deficiencies show up in blood tests, even mild dehydration which can worsen everything over time. Pins/needles/buzzing can arise from similar factors.

Feeling it harder to breathe in water around your neck suggests a hypersensitivity rather than lung or muscle problems. You might have a very mild asthma or similar condition that kicks in when your brain thinks your breathing is at risk. Part of asthma is often related to psychology. Therefore, I would work with a health psychologist or counselor.

Best,
Laurie
 

Sue

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I’m sorry for the loss of your uncle. It makes sense that ALS would be on your mind.

Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

I am not sure of what to make of “ischemic and hypervetilation tetany” except it’s not something that goes along with ALS. Neither does the numbness that you report.

Did any of your EMGs test the thoracic muscles? Those would be abnormal if you had ALS with respiratory onset. With ALS, EMG changes tend to be widespread by the time a person first notices symptoms, so even if only the limbs are tested and come out normal, that is generally sufficient to rule out ALS.

Twitching is common, nonspecific, and meaningless. It doesn’t matter where the twitching is, how often you twitch, or if it occurs in muscles that are moving or relaxed. Twitching is actually one of the least important symptoms when it comes to diagnosing ALS.

I would have to say that since you’ve seen 4 neurologists and have had 4 normal EMGs, it’s not likely you have ALS.

Your PFT numbers are not diagnostic of ALS. I don’t have an explanation for you there except to keep working with your doctors. My FVC is in the 50s, and I can breathe while supine without feeling short of breath. I really think there is some other explanation for your symptoms.


Thank you very much Karen,

as to my diagnosis of there any ot is a condition mostly provoked by stress . But I don't think I have it. On EMGs they did only limb muscles except one neurologist stick a needle at my upper back just into one place and that came back negative.

What I'm worried about is that my MEP and MIP weren't good, which suggest the strength of inspiratory and expiratory muscles.

I have to tell my neurologist to do EMGs of my thorasic muscles and maybe tongue and throat.

Thanks again for advice

Twitching more with effort with substantively normal EMGs suggests that with changes such as a better balanced electrolyte mix in your diet or more water every day, you could feel better. It is something to try. Not all deficiencies show up in blood tests, even mild dehydration which can worsen everything over time. Pins/needles/buzzing can arise from similar factors.

Feeling it harder to breathe in water around your neck suggests a hypersensitivity rather than lung or muscle problems. You might have a very mild asthma or similar condition that kicks in when your brain thinks your breathing is at risk. Part of asthma is often related to psychology. Therefore, I would work with a health psychologist or counselor.

Best,
Laurie


Thank you Laurie for your reply
 

affected

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I have to tell my neurologist to do EMGs of my thorasic muscles and maybe tongue and throat.
Hi Sue, I'm sorry for the loss of your uncle.

I would suggest you do not have to tell your neurologist what to do - if you had ALS it would have shown on your EMG as Karen noted this is a disease that is widespread and testing your limbs without thoracic muscles would have shown abnormalities.

The great thing is that you are not showing symptoms nor clinical signs of ALS.

What we find is best is not to try and tell your neurologist or other doctors what to do, but to ask them what is the next step.

Because that doctor is seeing you, touching you and reading all your test results, they have a far better chance of figuring out the next strategy, rather than anything we might suggest.

I hope you read the post Karen gave you the link to and can get some answers from your doctors soon - some things do take a while to figure out and then get treated. All the very best.
 

Sue

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Hi Sue, I'm sorry for the loss of your uncle.

I would suggest you do not have to tell your neurologist what to do - if you had ALS it would have shown on your EMG as Karen noted this is a disease that is widespread and testing your limbs without thoracic muscles would have shown abnormalities.

The great thing is that you are not showing symptoms nor clinical signs of ALS.

What we find is best is not to try and tell your neurologist or other doctors what to do, but to ask them what is the next step.

Because that doctor is seeing you, touching you and reading all your test results, they have a far better chance of figuring out the next strategy, rather than anything we might suggest.

I hope you read the post Karen gave you the link to and can get some answers from your doctors soon - some things do take a while to figure out and then get treated. All the very best.

Thank you for reply :)
 
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