Could this be respiratory onset ALS?

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Dec 29, 2022
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Hello everyone and thank you very much for your time, experiences and opinions.

I am male and 52 years old and am wondering if I may have ALS.

In October of this year I started having bad sleep problems. I would go to sleep and wake up at 2:30 am or so with high BP and fast pulse rate. Assumed it was sleep apnea since I was diagnosed with it last year. Then I experienced some very strange and rapid symptoms starting in late November - I felt like someone had wrapped a band around my torso and was hugging me. Made it hard to breathe. It felt very similar to something called the MS Hug. In the next couple of days I experienced numbness and tingling on the right side of my body focused on the hand and feet. I had difficulty in walking because I couldn't tell where my legs were in relation to each other. I developed a tension headache that started in my right temple and spread to my entire head, which lasted for two days. That was accompanied by facial numbness and stiffness.

Those symptoms now come and go but I've also noticed that I am having a hard time breathing as if my breathing muscles are getting weaker. I usually have decent sats but my pulse is very high which i understand is to keep my body oxygenated properly. The only time I don't have a high pulse rate is when I'm flat on my back.

MRI and CT scans are all normal. No cancer no brain tumor no brain or spinal atrophy. Wife is a radiologist and is convinced it's not ALS because she had them use some very high powered scans which in her opinion would have shown neuro damage in the brain and spinal cord, but I'm not convinced.

I've got some tremor and weakness in my hands but no fasciulations that I've seen. Right now I'm breathing pretty well on my back in bed. Hands are a little trembly. Legs are a little weak. Face feels like a mask and my eyes ache when looking left and right. No tingling or paresthesias. I've got restless legs like crazy though. Wife recently tested my reflexes and they were all normal.

I'm sorry to bother you all. I know posts like mine are infuriating. My main concern is that I have the breathing onset form of ALS because that seemed to be the first presenting symptom - the shortness of breath and the following on of the tight band of pain around the base of my ribs. I'm worried those were muscle cramps and now my external obliques have weakened. It feels like that entire area is weak now. My wife tested my reflexes and they were normal but it still feels like my whole breathing muscle area has weakened.

Thank you all for listening. I'm so sorry you are all dealing with this. I appreciate so much hearing from whoever can talk to me. I'm getting a Bipap for my sleep apnea so hopefully it will help me get some good breathing in at night.
Hi Morgan
I have a couple of questions.
Firstly, what are your breathing test results? I presume you have had extensive testing by a pulmonologist?
Have you been examined by a neuromuscular specialist and had an EMG?
What do your doctors think is happening and what is next diagnostically?

Sleep apnea is usually treated by a CPap, but you said you are getting a Bipap?

You say your symptoms are getting worse, but you haven't started treating the apnea.

ALS does not result in lowered O2 sats, but elevated CO2 sats.
Actually, Tillie, BiPAP is better for sleep apnea as well as ALS. It's just not usually used right off in sleep disorders, because CPAP is an older therapy and cheaper. Also, some forms of sleep apnea can lead to CO2 retention as well as reduced O2. That's why BiPAP across the board for apnea would be a good thing, and most people believe it will happen as costs drop, but today it's used more selectively.

I'm confident the BiPAP will help you, Morgan. Do use it as directed, and let the prescriber know if the settings need adjustment. I agree there seems no reason to think of ALS.
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Hello and thank you so much for taking the time to reply! I am waiting to see a pulmonologist and neurologist. So far reflexes in breathing area are normal (wife tested me she's a doctor). Will they be able to tell if this is ALS by testing a limb or will they need to test my obliques / breathing muscles?

Since CO2 is the concern im assuming the exhalation strength is what drives that? Would that show up on blood tests? My co2 has always been in the normal range when I've gotten blood draws.
What test results by spirometer should I be most concerned with? Also if I don't have any visible atrophy and only the breathing area is affected will a creatine kinase test still be elevated?

Thanks all and I will follow up with test results here. I am so appreciative of the answers that you guys have given to me - I'm going to keep digging and see what I come up with.

One last question if I may: if this IS ALS, how do I cope? How have you guys coped? I don't have the slightest idea how to even begin to accept this, if my worst fears come true.

Thank you all again.
Actually, thanks Laurie.
A complete pulmonary function test will include tests of your breathing muscles and your breathing capacity. The important numbers they will look at are SVC, MVV (the amount of air you can move in and out in 12 seconds) MIP (inspiratory strength) and MEP (expiratory strength). They will also look at other measures and, if you have any irregularities, will determine whether it is a restrictive problem or an obstructive problem (such as asthma or COPD). Understand, some abnormalities might be your norm.

If they find abnormalities, they might do an arterial blood gas to check O2 and Co2.

They may decide to do another sleep study that includes measuring blood gasses while you sleep.

Don’t worry about ALS. Get your breathing checked out.

I’m assuming no cardio issues
Rather than you digging, allow your doctors to do the testing and interpretations.
It is way to early to ask how our PALS have coped, you are racing way ahead.
They will know what they need to test and how by doing your examination and breathing studies. Again, don't try to jump ahead.

There could be so many reasons for your symptoms that are far more common and fit things far better than a rare terminal disease. You are not helping your breathing by working yourself up this way.
I hope you have some answers soon.
Hello again everyone;

Got the results of my sleep study back. My sleep doc flat out asked me if I was suffering from a muscle weakening disease because I have tons of hypoventilatory events. Told him about the neuro symptoms I have been having and he got me in to see their neurologist in one week which is unheard of fast. I'm scared but also relieved they are taking this seriously. They've also assigned their resident ALS / MND specialist to my case which again freaks me out but I'm again grateful.

In the meantime I am getting my BIPAP to help ease my breathing. I am prepared to use it 24/7 to help me get some energy back. I've been bedridden with extreme fatigue for a month now and I just want to get up again for a little while.

My question in preparation for the neuro appt: does it matter which muscles they test for EPS? I keep reading different things. Some say any muscle will do and some say it had to be a muscle with fasciculations and or weakness? Is a positive result specific for ALS or can that apply to other diseases?

Also of note: my sleep study from five years ago showed very similar results. I understand that points away from ALS due to the long time frame. I'll let the neuro doc puzzle over that one.

Regarding a pulmonologist; still don't have a referral. Trying like hell to get one. I was in the hospital just a few days ago for breathing problems and they never got one. They got me a multi mode ventilator and I couldn't breathe out against even the lowest pressure. Did much better on an auto servo. They did image and scan me and found nothing in the lungs to suggest obstruction.

Anyway I'm going to try to refrain from posting further until I get my diagnosis or exclusion. I know you guys get a lot of headaches from panicky people. I wouldn't have even come back except for the fact that the neuros and sleep docs are highly suspicious and concerned enough to call in their ALS specialist. So I'm in the agonizing waiting period prior to diagnosis.

In the meantime I'm going to try not to stress. I'm starting an ALS cocktail just in case - all supplements. I'm getting my BIPAP tomorrow and will be on it as much as I can stand it. Is there anything else I should do while waiting? Any resources or websites I can go to in order to be better prepared if the worst comes to worst?

Thanks again. Wishing you all the best.

Shoot I'm very sorry - I do need one thing. Do you guys have a website for setting up BIPAP settings for ALS patients? Or just info in general?
Since you have not been diagnosed, and since you mention an "auto servo" (ASV) model that would suggest the possibility of central apnea, which is not a feature of ALS onset, I would start with the prescribed settings based on your sleep study.
Thank you Igelb. As per the diagnosis can they test any nerve on any limb to diagnose or does it have to be an affected muscle, like one where I'm having fasciculations or weakness?
The EMG hallmark of ALS is specific abnormalities in areas that you think are fine. They will do a mix.
For an ALS diagnosis, they will do both a clinical exam (for weakness and other issues) and an EMG. ALS shows up in many muscles even though they aren't weakened yet. However, there are many other conditions that show up on both nerve conduction studies (usually done before EMG) and EMG.
Thank you guys. I'm heading to Cleveland Clinic this weekend because breathing is so difficult. I got out of bed for about an hour to do some light housework and now I'm flat on my back gasping. O2 is still normal but my abs are cramped and stiff and I feel my diaphragm spasming.

Cleveland is rushing me through triage to get me tested ASAP. I can't manage to breathe against a BIPAP so they have a representative from a breathing cuirass company meeting me when I show up. It scares the hell out of me that they are taking this so seriously but im also grateful and hopeful that I will have some breathing support I can tolerate even if this doesn't turn out to be ALS.

I don't know if I ever updated my symptom profile but I've been flat on my back for weeks with varying degrees of dyspnea. Usually my muscles don't hurt for breathing unless I do some light activity, then they cramp spasm and twitch and it's like breathing through s blanket. Lying down is helping but I feel like they are a battery running down. Got weakness in all limbs now but not sure if that's from too much bed rest or not.

Anyway the good news is that Cleveland Climic is taking this seriously. And I should have results to post soon. And with a diagnosis I can get that bresthing cuirass on. Hell even if I don't have ALS I still want that cuirass. I hate ppv. And ALS.

Igelb, fyi I did some research on ALS and central sleep apnea because I've had that most of my life. A couple of articles note a link between CSA and ALS but there's speculation the CSAs on ALS are hypoventilation:

My sleep doc basically said I cannot have an ASV becsuse I need a minimum volume of air moving to prevent hypercapnia and ASV doesn't really help with that. Said I need either a guaranteed volume machine or a full on ventilator. Hopefully he's open to the cuirass.

Thank you guys for helping me with all this. No further updates until dx/no dx.
"Hypoventilation" is an umbrella term meaning you're not moving enough air, that applies in some ways to all forms of apnea and SDB. My point was that pre-existing CSA is not uncommon and does not jump you to ALS.

A cuirass would typically apply to dx other than ALS because it produces negative rather than positive pressure. Hearing that, I would have a higher index of suspicion for a myopathy (primary muscle failure) or other disorder.

I wasn't recommending an ASV machine. I was commenting that you were alluding to one. Certain ventilators can be set so you have no pressure to breathe against ("zero PEEP"). However, apart from patients with trachs, that setting is typically used only for bronchospasm, not the major respiratory issue in ALS.

Zero PEEP is not used with ASV or the NIV settings that would typically be used in ALS, because most PALS need some expiratory pressure (a "stent") to keep their airway open. As a review, the link you copied failed to acknowledge that most respiratory impairment in ALS is obstructive at the beginning (as evidenced by the fact that a backup rate is seldom triggered in early ALS) and to make a long story short, more central/mixed later on.

Again, the vast majority of people who use some kind of machine, the cuirass least of all, to support their breathing do not have ALS. Let us know the final diagnosis.
PALS have the most trouble breathing when laying flat on their backs.
Good luck, let us know the outcome I truly hope you find relief.
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