Concerned about bulbar onset.

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Anton

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Hello all,
I'm 33 and have two small kids, I have for the last 5 months been experiencing a myriad of weird symptoms.

My main concern is that since late December i have had a lot of phlegm in my throat after eating, as well as the feeling of some food getting stuck in the back of my throat. It seems to get caught in the phlegm since i can some times cough it up. (Very small pieces)
I do not choke on food or liquids but i do need to clear my throat of phlegm after eating or drinking since i cannot seem to swallow that phlegm.
When drinking liquids i tend to swallow a lot of air.
When during a dry swallow my throat makes a clicking sound.
I though i might be silently aspirating causing phlegm, but a friend of mine who is a doctor said that silent aspiration usually only occurs in people with a impaired cough reflex and when i on a rare occasion where i do get some (the other day beer) wrong in my throat i do automatically start coughing.
I will be honest and say that i am severely stressed and anxious by now.
I also feel that my voice has gotten a bit more hoarse however my girlfriend denies it.
The other day i was watching myself in the mirror while doing a dry swallow and noticed that my muscles only moved in the right hand side, and feeling the neck above the collar bone i could only feel movement in the right hand side as well.
The exact muscle seems to be the left side Omohoiyd muscle but i'm no doctor.
A week ago i experienced a week where i was out of breath for no apparent reason, my doctor did a peak flow thingy which was normal and said he thought it was reflux. I took some ppis and it seems to clear up, but not the phlegm. I've later had a gastroscope and everything looked fine.
The last month I've lost around 8 pounds, out of my previous 190 pounds weight. But i cannot say if its because I've been eating less and is stressed.
My muscles seems to work fine, but i do have a lot of facis around the body. Mostly just before i fall asleep it will be either in the oesophagus, the shoulders or the jaw, lately just one quick twich/jerk of one shoulder just before i fall asleep. Nothing in the tongue to my experience. I have small facis all over including the face, but actual brisk twitches only occur in the jaw or shoulders before falling asleep.

Does these sound like a initial bulbar onset symptoms or is my anxiety going nuts?

I was diagnosed with a mildly herniated disc in my neck during Christmas at a neuro who did a MRI, this was before my swallowing issues. They did not suspect ALS but i am worried that the herinated disc might cover over an underlying issue. I have a follow up end of march (a long wait for me in this state).
It concerns me though where that herniated disc came from, since i had no trauma, so it is due to bad posture, leading me to believe my neck muscles might have been weekend before by ALS?
Extra info:
The herniated disc symptoms was apart from a stiff neck: shoulder and neck pain, tingeing sensations and stiff muscles in the left hand side of; back, shoulder, neck and arm.
Same side that i now see no muscle activity when swallowing.
The herniated disc symptoms are much better now but still there.
I'm concerned about how bulbar onset presents itself? Its very hard to find specific information about this.

Thank you for your time.
 

Kristina1

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No, that is not how bulbar onset starts. I am bulbar-onset myself and my experience has not been similar at all to what you describe. You could ask your doctor to order a swallow study if you are concerned about your swallow. many things could cause your symptoms.
 

affected

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Nup you are all good so far as ALS, nothing like bulbar onset (or any onset types)
 

Anton

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Thank you for taking the time to reply, i appreciate it a lot.

Update on my story:

I've now started to notice that chewing hard things like chips, nuts and bread crust can make my jaw feel tired. Not to the point where I cannot chew but noticeably more than usual i would feel.
I also have a tight feeling in the flanks of my tongue which was there for a week or so and a on and off tight feeling in my right cheek and jaw, they seem to function normally. Also when i try and do a half-way smile (in between neutral face and full smile) my left mouth edge quivers madly. Not with a full smile of neutral, just if i try to hold a smile in between.
I've also had a tight muscle on the back of my left thigh for a good while now, with tight i mean it feels stiff, but can bend and stretch as normal but it gets sore easily with exercise.
My swallowing is the same and I do still have some phlegm.

These new issues have gotten my worried again and I find it har d to wait for my neuro follow-up end march.
 

Bestfriends14

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Nope, not a bit like ALS as mentioned previously. You can continue to pile on the symptoms but they will still say no ALS. Please continue to follow up with your neuro and report back their findings after your appointment.

In the meantime, take a walk outside, learn a new hobby or volunteer with an organisation. Your symptoms don't say ALS but if you keep focusing on this disease instead of something productive, you are going to create new symptoms for yourself.

Good luck to you.
 

affected

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Still this is NOTHING like ALS which is about FAILING rather than FEELING.

I lost my husband to bulbar onset ALS and he felt perfectly normal and was upset that things simply would not work when they felt like they should. Please just work with your doctors rather than coming here, they can help you figure out what is going on, and it is most likely something that can be treated.
 

Anton

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Again thanks for your time and effort i appreciate it.

An update on my situation. I was eagerly awaiting my neuro follow-up set for the 31 of march. But was told that due to Corona it may be changed to a telephone appointment.
A huge blow to my mental state as i was really looking forward to some expert assessment.
My GP told me he would see what he could do, even though despite my symptoms he does still not belive it to be ALS.

I had an appointment with my GP telling him of my most recent symptoms (long list sorry):

Body wide Facis, they are never really long lasting (less than 5 sec) and in different locations, several times a day (10-) ranging from buttocks, thighs, calfs, arms, face, neck, belly, hands and the ones that scare me the most is in my left hand TDI, between the thumb and index finger. This is also where i believe my muscle is smaller. This my GP confirmed and felt it. He said it might be 80% - 90% the size of my right hand, which according to him is normal since im right handed. Weirdly i have had a lot of facis in my anal sphincter, weird i know.

I have Myalgias (Muscle pain) on and off in my hands and fingers, its very mild though. And in my one muscle on my back thigh that is constantly sore and tight, it gets worse with exercise.

My hands and fingers feels stiff at times but it varies throughout the day.

My biggest concern besides the accumulation of symptoms is by far the fatigue i get in my jaw and tongue when eating hard foods. (Hard bread crust, potato chips, ect.) This is really getting to me and have started within the last month or so. It seems to be worse in the morning but i cannot be sure.

My left arm gets fatigued when holding a cellphone up in front of me, not to the point of failure, but i can definitely feel its much harder than my right hand side. This could maybe be due to the mildly herniated disc i have c5-c6, that can affect some muscles in the arm, but not hand.

There's still the swallowing issue, by it self not an issue but concerning in the light of the other symptoms.

I will say this, there is no failure so far. Only fatigue and the described above issues but the chewing part really gets to me.
Doing 3 times 15 squads the other day left my legs trembling and extremely sore. Something that usually would be no issue.

I've tried to compose a timeline of my symptoms to draw a clearer picture, it includes some but not all of my symptoms, and shows that some went away again. Color for how worrying i find them.

symptoms.png


Based on this would you be concerned of ALS? I ask cause i really wanted that appointment to go through, but now it might be over a phone which is definitely not the same.
I have the option of paying for a neuro appointment myself with no coverage, but chances are that the wait will be the same, and is this something i should pursue or should I have more patience?

Thank you for your time, and i hope you are all not overly burdened by the recent Corona pandemic.
 

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None of your symptoms are ALS. Your doc doesn't think so, no one on the forum.thinks you have it, so why do you? Please drop it, ok? People on this forum actually have this disease and you are going on and on with no ALS symptoms,expecting forum members to soothe your unfounded worries.

Right now, because of covid, we are stuck in a country not our own, with a PALS who is immobile and a CALS (me) who bears total responsibility on trying to get him, our senior dog and cat, and myself home, a 25 hour drive. So please, enough with the fantasising about having ALS. It's not cool.
 

Nikki J

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As others have said it doesn’t sound like ALS.

my clinic has switched to televisits for all routine appointments for the duration. This is to protect everyone. So I would not be surprised if your doctor is doing the same. Covid 19 in an ALS person would be very very dangerous and people can be asymptomatic carriers. How would you feel if you brought it to a clinic

reschedule if you feel a need to be seen in person. Time is often helpful in sorting out neurologic issues whatever they may be
 

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Nope, definitely not showing a single hallmark of ALS.
Don't try and push on that appointment, the health services around the world are stressed enough without pandering to people with issues that are not life threatening just now. That specialist needs to be available to people with ALS who do need care and do have life threatening issues.

I'm not saying nothing is wrong, but you honestly do not have an emergency of any kind, let alone ALS.
 

PrimaVera

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I have to disagree. If you feel something is off in your body, pursue it...only you know how you feel. For the past 1 1/2 years, I was telling my Primary Care doctor that pills were getting stuck in my throat, and sometimes liquids would go down the wrong way and I would choke. I also had a weird burning pain in my ear, but no infection. I also noticed my CPAP was making lots of air come out of my lips at night. My lips were weaking, and keeping my mouth closed while sleeping became more challenging.

After an incredibly stressful year helping my daughter with a life threatening illness, things accelerated rapidly last fall when my voice changed overnight...slurred speech, sounded drunk but had not been drinking. Also noticed it was worse after a glass of wine or two. Started noticing in yoga that I could squat, but could not stand back up easily, noticed it took more effort to get out of a chair, then noticed that walking and talking with my friend winded me; had to stop talking and walk much more slowly.

Then the painless fascinations (twitching muscles) started all over my body. The EMG definitively showed abnormalities and I was quickly diagnosed with Bulbar Onset ALS. Since then, my speech takes tremendous effort, I have to use a voice amplifier to have enough volume to speak, and still most people cannot understand me. My legs can feel good, then half an hour later they are like spaghetti noodles with very little strength.

Again, if you feel something is off, consult your doctors. It may take many different specialists to get to the bottom of what is going on. The healthcare provider who really got things moving for me was my speech pathologist. During swallow testing she saw something odd and immediately notified the neurologist about it. Without her input, I would still be wondering what was happening.
 

lgelb

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Prima, there is a large difference [progressive loss of function vs. none] between your case and Anton's, which you will come to appreciate more, perhaps, if/as read more CIBALS stories, which is entirely at your discretion; you can hide any subforum(s) you like.

We have found it best to be clear on the criteria of concern, based on both experience and medical literature, lest we foster undue health anxiety, which is already common among our new posters. In truth, most PALS never come here asking if they have ALS because it is so obvious something is functionally wrong. They get it diagnosed, as you did, and then come here. Of the very small minority of CIBALS posters who have ended up as PALS, if you read those threads, you will see that they are very different.

Anton, many people grind or clench their teeth in sleep and that can affect chewing. An over-the-counter night guard might be worth trying. Also, I believe some level of dental appointments will be available in the not-too-distant future in Cali, and then you could get a customized night guard fashioned if your dentist believes it worthwhile.

Herniated disks are fairly common even at young ages, especially with poor posture, lack of muscle tone, and too much hunching/texting/keyboarding. A good stretching regimen to help your back and keep your muscles/joints strong/supple overall, often the best recipe for twitches, aches, and stiffness, is available via thousands of videos and apps. "Classical stretch" is always good.

Best,
Laurie
 

Anton

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Thank you all for your time, since my last post alot has been going on and I'll try and share some of it.
I started to notice that my right leg was rather asymmetrical to my left. Some individual muscles were smaller and some where larger. Its easy to spot and three different neuros agreed, they refered me to a neuro phys for a EMG.
I should note that all my reflexes and strength was normal, so the main reason for the referral was the "atrophy" and my concern.
So I have seen several neuros, and two neuro phys- None of them was concerned as I was.
Since noticing the "atrophy" in my right and dominant leg, i've also started to feel that leg is off. It gets more sore, and my gait seems off. I'm not falling or anything and do fine on stairs, tip-toes, heels and all that, but once in a while my feet will scuff the ground when I'm walking outside.
Anyway I am very concerned about that leg. "Atrophy" is most visable in calf gastrocnemius/soleus and inner thigh, adductor.
So finally i got my EMG, and the neuro phys who did it diagnosed me with Benigne Fasciculations.
However the EMG was not normal. I'll post the results here, but it is not in english, but I belive most is latin anyway right?

The conclusion was as the doctor wrote:
EMG in biceps brachii dxt., Extensor digitorum communis sin. and vastus medialis sin .: is normal.
EMG in gastrocnemius dxt and sin .: shows reduced / normal recruitment pattern with normal amplitude, no denervation activity or fasciculations. Normal mean potential duration but increased mean amplitude resulting in the diagnosis of neurogenic.

My concern is that he missed something, due to the needle placement or something. He thinks that the "atrophy" might be congenital or have always been like that, its hard for me to tell if it has, I honestly do not know.
All I know is that i now also have symptoms in that leg which are new.

Do any of you have better insight into EMG results than me? Cause all i see is that it isn't normal.
Nerve conduction in tibial was normal.
EMG.png
 

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Hi congratulations on a benign emg. No they didn’t do the wrong muscles. First they know what they are doing. Second the changes of ALS which you don’t have would be seen in the same muscles that have the mild/ benign issues if they were a sign of anything sinister which they are not.

since you have no weakness no reflex abnormalities and a benign emg you are good to go. Rejoice in your happy news
 

Bestfriends14

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Congrats on being told by several neuros that you do not have ALS by way of clean clinical exams, a clean EMG, and no ALS symptoms. That's a wonderful thing that our ALS members wish they could have heard. Glad to hear that you no longer need to be here. That's a wonderful thing that I do hope you'll grateful for, and that you will not look for reasons to chase an ALS diagnosis.

Good luck to you and take good care
 
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