Old 07-24-2018, 09:27 AM #1
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Default Inquiry about Respiratory Onset ALS

I have read the “Read Before Posting” section and must admit that I do not have clinical weakness. However, my symptoms are not typical of limb onset ALS, but rather respiratory onset (or perhaps thoracic?). Quick information about me, I am a 30-year-old male. I completely understand the statistical probabilities mentioned in the common questions post.

Two months ago, I experienced a rather sudden onset of body-wide twitches, starting in the calves that go 24/7, with the second most activity within the abdomen and rib area (these feel more like “pops” and flutters). I get twitches just about everyone else you can imagine but are quite sporadic. Along with the twitches, spasms, and muscle stiffness, I get fairly random cramping in the feet, hands, calves, and abdomen. The abdomen cramps have been the most violent, where they will actually clamp down. General coordination and clumsiness has been present since onset.

I saw a general neurologist one month after onset of twitches who did the typical clinical exam, stating I have no clinical weakness or apparent atrophy. She still ordered the EMG in the left arm/leg just to double check, which came back normal (CK blood test also normal). I was a bit unimpressed by the doctor who conducted the EMG, as the only thing she said to me was “everything looks normal” without any explanation or report. The general neurologist has also ordered an MRI but is scheduled for next week.

Since then, symptoms have progressed, which it is now about two months after onset of twitches. The most startling symptom of all is the shortness of breath. It worsened this past weekend, awaking me during the night, gasping for air. The best way to explain the sensation is my abdomen feels like it is squeezing down, not allowing me to take full breaths. This has persisted during the day, especially when walking around or doing household chores, but is much worse at night, waking me up every couple of hours. I’ve also been having mild headaches and dizziness, starting a couple weeks ago. Along with the shortness of breath, my energy levels have plummeted, making me need to lay down frequently throughout the day and frequent yawning. One thing I want to point out about the shortness of breath is, I have had lifelong asthma, and these are in no way shape or form similar to an asthma attack. I even tried my inhaler just to be sure, and it did nothing since my lungs are functioning normally. Also, I have noticed difficulty swallowing phlegm and needing to clear my throat frequently, as well as very bad dry mouth during the night (the dry mouth isn’t as bad during the day because I drink a lot of water). Lastly, I have noticed my eyes have begun jumping. No, I do not mean eyelid twitches (I don’t have those). It can occur at any time, but most often happens when reading. My eyes will literally jump from one position and then return to center.

Finally, I have perceived atrophy in my left thenar muscle as well as the muscle on the top of my right foot near the outer ankle bone (not sure what that’s called). Both of these areas also get frequent twitches, and as for the thenar muscle, some that make the fingers move. These muscles are certainly not completely gone but are much smaller than the opposite side.

Again, I realize these are not the typical limb onset ALS symptoms. If I were to have shortness of breath without all the twitches, cramping, and stiffness, I would absolutely not be thinking ALS. I also realize this is extremely rare, so even finding people who have experienced this or have known someone who experienced this will be difficult. I still thought it was worth reaching out, because I am trying to decide if I need to find a possible second opinion from a neurologist, or if I should seek a different type of doctor for the breathing issues. Thank you for any input you may be able to provide.
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Old 07-24-2018, 01:06 PM #2
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Default Re: Inquiry about Respiratory Onset ALS

Yes, I would see a pulmonologist about the breathing issues that seem different from asthma, and do that first. Perceived atrophy and twitches without clinical weakness and a normal EMG make the neuro side of things seem much less important right now.

I don't think at all that you have ALS, but there are sleep disorders that come to mind, as an example, that can contribute to how limb muscles feel. Something more directly lung-related is also possible.

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Old 07-24-2018, 03:24 PM #3
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Default Re: Inquiry about Respiratory Onset ALS

Thank you for the quick reply. I am getting a physical with my PCP tomorrow, may provide updates if that is okay.
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Old 07-24-2018, 08:51 PM #4
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Default Re: Inquiry about Respiratory Onset ALS

As Laurie said seeing a pulmonologist makes the most sense. If you need a referral, ask your PCP.
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Old 07-25-2018, 12:52 PM #5
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Default Re: Inquiry about Respiratory Onset ALS

Thanks Kim. Unfortunately the PCP appointment didn't go well. Since my lungs sound clear and my abdomen appears normal, he doesn't want to refer to pulmonologist. I have been referred to neuromuscular specialist by the general neurologist, but appointment isn't for two months
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Old 07-25-2018, 02:40 PM #6
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Default Re: Inquiry about Respiratory Onset ALS

Does your plan require a PCP referral to see a pulmonologist?
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Old 07-25-2018, 04:06 PM #7
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Default Re: Inquiry about Respiratory Onset ALS

No my plan doesn't, but the 3 pulmonologists I called yesterday require it. Healthcare in my area is not great. I may be able to self refer myself for a sleep study, which I'm looking into.

If you don't mind me asking since you've been extremely helpful, I've also been very concerned with my cramping. It seems to be brought on mostly at rest, or sometimes just rubbing my feet together. Also in both hands, my fingers stay in the locked position after squeezing or gripping. Even gravity isn't enough to release them. My Nerve study was normal so not thinking carpal tunnel. Just curious if there's anything that separates ALS specific cramping from BCFS. Thanks again for all your help.
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Old 07-26-2018, 12:02 AM #8
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Default Re: Inquiry about Respiratory Onset ALS

"Cramps" in ALS means as many different things as in non-ALS. But the vast majority of anything resembling cramping can be helped with rebalancing electrolytes, hydration, exercise and sleep. Magnesium lotion can also help hot spots. If gravity does not release the cramp, what does? Mustard, pickle water and tonic water are other options to try.

We always advise that everyone get and keep a copy of all reports and results. If you obtain and post the EMG, we might be more helpful.
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Old 07-26-2018, 07:12 AM #9
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Default Re: Inquiry about Respiratory Onset ALS

I will try to obtain a copy of my report, thank you!

As for the hand locking, I can still open them on my own, I just noticed they get stuck and will stay there unless I spread my fingers
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Old 07-26-2018, 07:16 AM #10
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Default Re: Inquiry about Respiratory Onset ALS

start with a sleep study to maybe get to a pulmonologist. my husband has respiratory onset ALS. our experience in the neuro dept at the cleveland clinic was not a good one. no one there listened to his concerns about his abdomen or breathing. after like a hundred tests, they finally agreed to diagnose motor neuron disease. we were lucky to find a wonderful neuro at another hospital, Dr. Judah Lindenberg, who DID see slight abnormalities in one thoracic region during the test which i forget the name of now. judah was not afraid to make the diagnosis of resp onset als. he immediately prescribed a sleep study for my husband where they found he stopped breathing over 60 times an hour. from there he immediately went to a wonderful pulmonologist back at the cleveland clinic who got him on bipap. from there, our awesome neuro referred us to Dr Ray Onders at University Hospital , who implanted my husband with the diaphragmatic pacer. The pacer is the reason my husband is still alive. It has been everything for us these past two years. and the bipap. pacer is on 24/7. bipap all night and sometimes during day. good luck to you.
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Old 07-26-2018, 07:33 AM #11
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Default Re: Inquiry about Respiratory Onset ALS

Try to relax and enjoy your life every day. whether you have ALS or you don’t. This is important to do. Nothings going to happen in two months that you can stop anyways. Your ALS is going to progress as your ALS progresses, if you have it. I remember the months of frustration that we went through when all the doctors said we can’t find anything wrong with you, yet my husband continued to say something wasn’t right. he kept tripping and he felt like was walking through tar. We went from thinking it was just stress and aging ... to a hip issue ...to a brain tumor ...to motor neuron disease ...to respiratory onset als. There is a book about Lou Gehrig that my husband says had he read when he first started having symptoms he’d have known immediately that he had ALS. I can’t remember the exact name of the book. But for those of you searching to describe how you feel with the early symptoms – it helped him. Anyway. My point is, don’t obsess on a diagnosis to the point that you lose eight months of your life fretting and worrying. You never know. These may be the eight months when you can talk and walk and eat. .Do however be persistent with doctors and find one who listens to you. Get things in your life in order like your wills your estate etc. That is something that everyone should do, and fear of an illness is as good a reason as any to take the plunge and get these things done. You’ll feel so much better once you have these things done - Whatever your diagnosis turns out to be or not to be. I hope this makes sense. Sorry for the voice text mistakes. Just had to respond on this issue because I’ve been there.
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Old 07-26-2018, 11:51 AM #12
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Default Re: Inquiry about Respiratory Onset ALS

Thank you for your story mnatale. It sounds eerily similar to what has been going on for me. Even down to extreme hip stiffness for no apparent reason. Were his twitches widespread throughout the body and constant?
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Old 07-30-2018, 01:28 PM #13
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Default Re: Inquiry about Respiratory Onset ALS

Quick update in case anyone happens to come across my post on the future. Ended up in the ER yesterday because shortness of breath and sleeping issues have intensified. MRI of full spine and brain was normal. Have to undergo pulmonary test for neuromuscular, as well as sleep study.

ALS is no longer being ruled out despite clean limb EMG. Have been referred to neuromuscular specialist who will then decide about additional EMG, perhaps in thoracic or bulbar.
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Old 07-31-2018, 06:39 AM #14
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Default Re: Inquiry about Respiratory Onset ALS

they have never been constant as in all day long or hours at a time. they jump around and are always most noticeable at night. thigh, wrist, upper arm, etc, but most of the “flutters” were concentrated in and around his abdomen.
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Old 07-31-2018, 06:43 AM #15
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Default Re: Inquiry about Respiratory Onset ALS

the point you are at is when we were told it was likely a brain tumor. keep your head up. it’s a guessing game still. It could still turn out to be stress, sleep apnea, lyme, who knows. stay positive. keep us posted. i will pray for you.
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