Disparate symptoms adding up to ALS?

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SaritaT

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Back in January I developed odd breathing problems after going through a bit of a tragedy. My breathing became dysrhythmic, erratic, often labored, often accompanied by chest pain, and as time wore on it became harder and harder to coordinate breathing with talking, eating, drinking, swallowing. I also began to experience spasms of the diaphragm muscle, and eventually noted that my inhale/exhale had become far more pronounced (in terms of seeing chest and abdomen rise and fall) than ever before. My breathing continues this way today, with episodes of such severe chest pain and constriction that I've visited the ER on a few occasions. Sometimes it feels like it's all I can do to keep breathing, my diaphragm muscle sometimes feels weak and overtaxed, and I have the frequent sensation of heaviness in my chest.

Many visits to the doctor and a pulmonary function test and arterial blood gas test have uncovered nothing.

Then a little over a month ago I very suddenly developed trouble swallowing both liquids and solids, with much coughing, throat clearing, and wet gurgly voice, and the feeling that my tongue is involuntarily pushing forward against my teeth and not pulling food backward as it should. And I've had some muscle twitching in my face, in my chin and upper lip. I also developed, again almost overnight, what appears to be gastroparesis, very slow and painful digestion accompanied by chronic belching and nausea. A modified barium swallow didn't show any nasal regurgitation or tracheal aspiration. I'm currently taking Omeprazole (no affect on stomach issue) and awaiting an endoscopy. I have talked to two neurologists, neither of whom have suggested ALS, but could that be what I'm facing? I've also experienced some cognitive/behavioral changes, my higher level thinking seems to be negatively affected and I've exhibited some childlike behaviors totally uncharacteristic of me. Can anyone tell me if this sounds like ALS?

One more detail that I forgot: I've also developed hypersalivation in the past couple of months, and it's very difficult to swallow all the excess. I have not, however, experienced drooling.
 

lgelb

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It does not, but I would get an EKG if you haven't had one. You might also consider a home blood pressure monitor and use it when you feel most symptomatic, to make sure you are staying within range. I would also see (via video if that's safer where you are) a counselor to make sure that the tragedy (my sympathies) is not affecting your body unduly.

Best,
Laurie
 

SaritaT

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Thanks for your reply, Laurie. In the past few months I have had an EKG, cardiac enzymes, and an echocardiogram done, all normal. I also wore a Holter monitor for three days, heart rate was somewhat elevated but not dangerous.

I have read that bulbar ALS usually starts with slurred speech, but can sometimes initially present with difficulty swallowing. I also read that respiratory symptoms usually don't occur until later, but occasionally (rarely?) show up early on. So I know it would be unlikely, albeit not impossible, for ALS to initially be evident in swallowing and breathing issues.

I don't currently have another neurology appointment scheduled, and I have been talking to a therapist, but it's definitely concerning when you have to swallow several times, very carefully, to ingest one bite of food. I'm not sure if I should request another neurology appointment, go back to my PCP, or.... Thanks again for your input.
 

SaritaT

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One more question, which I hope won't annoy or frustrate (I did do the required reading before posting, but I want to be sure I'm clear on these symptoms): In re swallowing and talking, my tongue seems to be a bit dysfunctional and slightly spastic. There are some (I think minor) fasciculations when I observe my tongue at rest. The tongue muscle feels overstrained and tight when I talk for more than a few minutes, and the muscles in my jaw and mouth (inside and surrounding) also feel overstrained and overtaught with much talking (a good reason to practice silence, I guess). If anyone is willing and able to provide a little reassurance, I would greatly appreciate it.
 

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No, you're not evidencing ALS. Period. Please don't be like the many folks that come here, adding symptoms that are not ALS, in order to hear that somehow, someone here, will say that the symptoms are ALS like. Be happy. Be grateful. You don't have ALS symptoms.

Take good care.
 

SaritaT

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At the risk of annoying, and in the hope that you will bear with me in patience and understanding, I'll post one more time: The spasticity in my tongue seems to be getting worse, and it seems to be causing some lack of coordination at the beginning of my swallow. My breathing issue is causing shortness of breath after minimal exertion (and it's not COVID, I've been tested for that), and the twitching on the left side of my chin has become pretty constant. I've also had trouble the past few days standing up after being seated in a chair, and in climbing stairs: both require far more effort than they should. I have an appointment coming up with a new PCP, but I've read that many doctors aren't knowledgeable enough about ALS to consider it. And maybe (hopefully) you'll still say my symptoms aren't ALS-like enough to be concerned. Thank you in advance for any experience you are willing to share. I greatly appreciate your time and patience.

I also failed to mention that I've experienced some serious emotional lability this week: crying or sobbing one minute, laughing inappropriately the next. This is not normally how I respond to situations, and it's disconcerting, to say the least.
 

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Sarita, it sounds like you are very concerned and are looking for reassurance from folk online who are actually unable to examine you or who know your medical history. Laurie above provided some reassurance, as did bestfriends, that your reported issues don't seem to add up to ALS. If you are struggling, please go back to your doctor to get to the bottom of your symptoms.

With regards to doctors not being knowledgeable enough to "see" ALS, they certainly can see when there is a neurological issue and send you on to a specialist who can provide the appropriate care.
 

SaritaT

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I very much appreciate that your knowledge of my situation must be limited, and that asking about symptoms in an internet forum is also by nature very limited in what it can accomplish. I also very much appreciate your time and willingness to respond!

I am attempting to schedule another neurology appointment, but at this point my neurologist has no openings in his schedule. I have an appointment with a new PCP, as my last provider was actually a physician's assistant and not a full-fledged doctor, and is also so overbooked that appointments are weeks out at best. So, given the lengthy wait time, yes, I'm hoping for some hope!

Again, thank you for your time and kindness in replying. May you have a peaceful day.
 

SaritaT

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At the risk of being considered one of "those people," the people who can't let go of the fear it's ALS no matter how much reassurance they receive, I'm here again because 1) for the past few days I've even been short of breath when I'm lying down, or awaken from sleep, or get up from my bed and walk a few steps to the bathroom, 2) my breathing has grown noisier, i.e., I can hear the inhale and the exhale is almost a "huff," 3) my swallowing has become "heavier" and less coordinated, causing me to hold my breath for too long each swallow, and 4) I've been "scuffing" my right foot when I walk: the first time or teo, I thought nothing of it, put it down to clumsiness, but then it just kept happening. I know the scuffing isn't the same as foot drop, but given the other symptoms.... I have a telephone (grrr!) neuro appointment in two weeks, and I know respiratory/bulbar onset ALS is even less common than limb onset ALS, which is itself uncommon. But it DOES occur, and something is very wrong with my breathing and swallowing (and my digestion - as stated in my initial post, I may have gastroparesis, awaiting testing). So, if anyone who has (unfortunately) experienced or seen respiratory/bulbar ALS up close is willing to comment on the likelihood or lack thereof, I would greatly appreciate it. Many, many thanks to those of you who are suffering ALS or carrying the suffering of a PALS, but take the time to help those of us who are seeking and waiting upon medical answers.
 

Bestfriends14

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So, in 9 months, you think you have developed bulbar ALS, respiratory ALS, and limb ALS, all with no failure of function? Please stop...
If you had ALS onset, you would not be having a telephone appointment with a neuro. Report back AFTER your telephone appointment with the neuro.
 

SaritaT

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I have a telephone appointment because my insurance is accepted next to nowhere, there is only one local hospital I can go to for specialty services, and their COVID protocol may actually endanger people in need of medical help by preventing them from receiving it. I certainly have no desire to annoy or exasperate: I am simply very scared, and frustrated myself by the lack of response from medical providers. It's getting progressively harder to breathe when lying down and I wake up every hour, though I prop myself up on pillows, and swallowing is so delayed it can leave me breathless. Since Sunday I've experienced twitching in my left arm and leg and the left side of my torso, which I can only hope is coincidental. My appointment is on the 12th, and I'll be calling today to push for an in-person visit one more time. I appreciate the fact that anyone with ALS or caring for someone with ALS is willing to confer with and advise those of us who have the fear.
 

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Perhaps going to the ER will get you seen faster. If you are having such problems breathing, your CO2 could be rising, thus putting your body in an unsafe spot. Really and truly, your all over the place symptoms don't fit with the pattern of ALS. Having said that, that does not mean something isn't wrong. The ER will see you if you go in and tell them your breathing issues. Ask them what is wrong with you, not "do I have ALS?".

Good luck and update after your appointments.
 

SaritaT

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Thank you for your advice. They should be able to check blood gasses in the ER, so at least I could be certain I'm not at risk in that area. I greatly appreciate your kindness.
 

SaritaT

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I was able to secure an in-person appointment after all, and sooner than originally scheduled, so I had a neuro exam yesterday. This neurologist was more thorough than the first one I saw a few months ago, and he seemed really to be listening to my concerns. He checked things from the elevation of my soft palate to tongue and facial muscle function, to the ability to walk on my toes and heels, etc. He saw no neurological deficits and said my reflexes are all completely normal. I asked about respiratory and bulbar onset ALS, and about my breathing problems and swallowing issues. He said that even dysphagia that causes throat clearing and wet voice can have non-neurological causes. He believes I have Functional Neurological Disorder: the symptoms are very real and can be distressing and disabling, but they are psychogenic and due to trauma, not neurological in origin. He did not think further testing (EMG) was necessary. So, do I assume my now chronic need to clear my throat, hoarse voice, and difficulty swallowing even saliva, and dysrhythmic labored breathing are the product of trauma (and anxiety rooted in trauma), or...? This neurologist has seen ALS before, and said that if I had respiratory or bulbar onset there would be SOME indication in the tests he had me perform. Thank you in advance for any experience and advice you are willing to share!
 

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FND is a real and disabling condition. Think of it as a software issue where things like ALS are hardware issues. The great news is that it is treatable. The earlier the better. There are fnd specialists but you may have to search.

there are facebook support groups for it. Also if you search I believe I posted a year or 2 ago on this subforum a link to a video about fnd from Mass General. There is a doctor there David Perez who specializes in fnd and the video showed a young woman and her recovery from fnd.
 
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