2nd thread update on “Could this be bulbar ALS”

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Txu4urtime

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Hi everyone, apologies for 2nd threat. I was hoping as you all kindly wished me well that I would not need to update you.

It's an update based on a recent informal in person consult with top NM Doctor that I consulted through a personal contact. I’ll keep to the point. Again, thank you for your support.

Recap
49 yr old male. Recall I’ve had 4 EMGs in 6 months since July limb Issues and Aug throat issues onset. Despite these 4 EMGs, top NM has new info (NM section below ).

Although onset hams, tris, and lats Muscles are getting increasingly fatigued during very basic household activity, they do no show clinical weakness However.

Recall I was Diagnosed With dysphagia in early October . it’s getting progressively worse. GI and ENT issues ruled out. Tongue is fine, I can swallow.

But now I need to to often very strongly clear My throat and cough frequently and forcefully to clear residue and secretions And Mucous in throat after eating often unsuccessfully. It used to me minor. Now needing to clear throat is very frequent.

When I cough now small residue of food comes out now. I now also snort a lot especially after eating like as if food residue gets stuck in sinuses (I can feel residue of food go back into throat) and frequent post Nasal drip.

Throat now seems to be constantly filled with food or secretions. I often need to consciously and repeatedly swallow over and over to try to get Thick secretions down , again ofTen unsuccessfully. I now also started to cough while eating recently.

Gurgling throat noises after drinking, throat burps, drooling at night, pooling of thick mucous in throat all worsening.

And brisk Jaw jerks at night worsening.

Now eating mainly puréed food. I need to wash down my food after every bite or so with apple juice (not water it pools) to make it go down smoother and not stick as much.

increased overall fatigue getting worse. Difficulty doing basic house chores. I have always been very active.

oxygen levels down to 91-92 percent when lying down trying to fall asleep. I’ve also been in good form before. Usually 94 during day. Used to be 97-98 before issues.

Now sleeping with my mouth open. Which I never did. Mouth very dry and pasty. Can’t sleep anymore breathing through nose.

Occasional sudden involuntary forceful exhalation while sleeping.

No slurring - tongue EMG performed in Dec but that NM doctor acknowledged it’s to rule out slurring not dysphagia

All other Neuro issues and other medical issues ruled out including myasthenia gravis

5th NM Informal clinical Look

- Top NM doctor in related field saw me informally through personal friend

- NM noticed muscle wastage in both hamstrings, left bicep and back (Dents, crevices). NM noted that while my neuropathic pain In hamstrings and tris is rare, it can be seen early on in 2-10 % Of people.

- NM said usually slurring happens first if bulbar first but dysphagia can occur first occasionally.


- NM noticed when I ate a rice cake with peanut butter I had difficulty swallowing it near the right pharyngeal muscles where occupational therapist saw weakness in October. I had to hurry and wash it down with apple juice because it was going down so slowly.

- NM acknowledges that limb muscles are 5/5. No clinical weakness.

- NM said while nighttime myoclonus is very rare it has been seen. Also said that while internal body tremors are extremely rare, it can happen. I believe before joining this forum I saw members speak of these issues

- Full body twitching now.

- Mild calf cramping I had early on is now more painful. Not severe but more painful.

- NM puzzled that 4 EMGs did not pick up anything despite dysphagia and muscle wastage, however nM did say it can sometimes take up to 12 months or so. NM said in neurology Time will tell.

Next steps

. NM ordered new video fluoroscopy to compare against Sept one that saw residue near aortic arch. NM believes residue is now at throat level close to Adam’s apple.

. NM referred me to a pulmonologist

. NM wants to wait until June to conduct another EMG

Meanwhile, my dysphagia and thick secretions/food residue slowly worsening. Any advice for that ?

We all have our crosses to bare and as a 49 year old loving father of a loving 7 year old boy, I’d be lying if I said I wasn’t concerned

thank you again AJ

ps. My GP for 6 months consults over the phone always maintained it was anxiety especially with 4 negative EMGs. He saw me in person last week and I showed him the wastage, swallow test and my fatigue and made a 180 and said “as a scientist (he uses that a lot) I cannot rule it out at this point”...
 
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Clearwater AL

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Tku4urtime, I hope you find the cure to your problem. I have followed you for
over a month now. You have searched endless Threads going back to 2008 in
search of something/anything/possibilities to may convince yourself you have ALS.?
Why?

Four EMGs... no indication of ALS. You're pursuing another EMG in June.
If possible post the summary/conclusion of your last EMG and if the other
knowledgeable also see no relationship of your numerous symptoms you
have posted maybe, just maybe thy may help you with your serious Health
Anxiety.

Again, for over a month you have been searching this Forum (some Threads going
back 2008, 2012, several years ago) nearly being obsessed with this. My opinion.

I hope the replies that follow may help you.... and some may be ill with me
for my reply. It's the way I see it.

Again, I hope someone can help you.
 

Txu4urtime

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Hi Al, I Have always respected and appreciated your honesty. I sincerely do. You’re Very right about obsession. But, in all sincerity, it’s because my symptoms are objectively worsening.

I will post 4th EMG results, but notice how they disregard dysphagia despite my formal diagnose. Also the NM in the report says that I asked for MG blood work. I never did because I knew my symptoms didn’t correspond. She took the paper work out and said let’s look elsewhere yet pinned it on me in the report, once more giving the impression of health anxiety. Believe me Al, I promise you, I have my son to take care of again and not waste time on health anxiety nor waste the energy of altruistic and caring members here.

One of The top NM Although surprised said it’s not impossible to not show detectable signs yet after 6 months and said the standard protocol for major hospitals in our country is 3 Body EMGs over 12 months. The 12 month window ensures a longitudinal perspective. Not reassuring given throat symptoms.

Lastly, I’ve been on meds and counselling since the beginning and even the psychologist on video have told me they’ve seen a steady progression of increasing throat issues. (Clearing, coughing, snorting etc ). I never thought that they would notice such things.

I want your to be right Al, I do. But array of Objective symptoms push me back down every time. To be Frank, I don’t know if my throat will make it to June.

with deep respect,
Thank you Al
 

lgelb

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I advised you to see a pulmonologist in November. You reported that your sats were low then, and that you had evidence of dysphagia.

I'm not going to parse everything you've posted but if the pulmonology exam/testing is not revealing I would circle back to GI and ENT or seek second opinions to rule out mechanical difficulties/tumors.

Whatever the level of muscle wasting, with continued normal strength over its reported progression, given a choice between a primary muscle disease (myopathy such as can present in slow forms in adulthood) and a neurological disease, the former seems much more likely, if either does in fact exist.
 

Bestfriends14

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Post the summary/conclusion of your EMG, please.
 

Txu4urtime

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Hi AL, here is 4th EMG. A few remarks

- I will agree with you. Nothing here. In fact all 4 EMGs in 6 months were negative. But I’m regressing. That I pledge. I wouldn’t waste your precious time.

- Attached NM is not ALS expert. NM also did 1st EMG in Aug and Dx BFS but admitted in Dec that BFS is ruled out due to dysphagia

- NM doctor cannot explain dysphagia. Makes no mention of Occupational therapists observation of weak swallow assessment nor of residue in throat from barium swallow.

- in Dec I was forcefully clearing throat etc. Symptoms have since worsened.

- Top NM is the one who suggested we cover a 12 month window. So June EMG

- as a note of interest this attached NM and colleague (Not ALS expert) who did a second opinion told me 4 EMGs in 6 months was enough (I agree 4 is a lot in 6 months) but they did admit to a third party who I am familiar with that their protocol is over 12 months to be sure. They never told me that. They chalked it up to a anxiety. Yes I admit I’m anxious but the symptoms are fuelling the anxiety not the other way around I assure you on my honour and honesty which are core values.

So to conclude You won’t find much here. Or other 3 EMGs apart from 2 fasciculations that NM mentions in report. I get it. But the fact that the top NM didn’t rule it out and my GP who was convinced it was anxiety for 6 months until he saw me in person and not can’t rule it out, raises deep concerns I will admit

thank you Al and others.
 

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Txu4urtime

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Hi lgelb, thank you for your reply. Quick answers.

- Txs to you I asked attached NM and was refused.

- when I took a picture of 91-92 percent oxygen, and showed top NM they agreed and put in request. I thank you for that. I would not of though of it.

- what I didn’t mention is I went to another city with a friend to see top ENT. 2nd ENT. He ruled out cancer. Did a FEES and said was normal but when I did the rice cake and peanut butter test he said “it’s going down slowly isn’t it “ he said FEES won’t see that and I would need another video fluoroscopy which attaches NM refused a couple months ago and top NM requisitioned.

- not to overburden they forum I tired to not overdo it. So yes, my hams, tris, and lats are slightly weaker. That’s the thing. Nothing major. How do I know ? I’ve always done exercise bands and now, only in those 3 muscle groups I can do slightly less repetitions than I’ve always done. It’s not significantly less, but less. And my left arm trembles a lot when doing overhead press near the end of my reps which it never did before. Attached NM said “age”! In 6 months ! So yes , onset muscles are slightly weaker. But only slightly based on my years and years of doing exercise bands. All other muscles I’ve been able to keep same repetition range.
 

Txu4urtime

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Hi Clearwater Al,

- I gave much thought to your use of the word obsession. I will tell you why I obsess more precisely.

- I write this final post until a definitive answer, as I just finished a 30 minute coughing fit while eating/chewing rice cakes with hummus that a month ago I could eat without coughing. And now with a large globe of mucous stuck in my throat that I can’t clear.

- I promise to only return with a definitive answer when the times comes. Good or bad. If I don’t return it’s because doctors’ clear anxiety- biais led to inaction regarding my dysphagia causing me to be unable to answer back

- I search and search and search for one simple reason Al. To somehow justify that life long chronic stress didn’t make me lose the love of my life, my beautiful son, and he the love of his life, his loving Daddy. He is a Daddy’s boy.

I devoted 7 years of my life exclusively to my son as a single father - didn’t even date- who had him 65 percent of the time and loved and cherished every Second together. See the love we had attached. Strangers would often stop us and say they have rarely seen such love between a Daddy and a son.

—————————

- I will tell you honestly why Al I search and search. Without wanting to cause any offence to pals, and cals it’s Because crushingly my body, mind, soul and heart knows I have it. It devastates me to say so because I will lose my boy and he will lose me. I know I have it without question. If you were in my body for a moment you would have no doubts.

Crushingly, as I know it must have been for all of you, you will see me on the other forum sharing crushing news.

- my infinite love for my son and our inseparable bond would never ever keep me from him. Nothing nothing nothing but disease or maybe seal team 6 could keep me from him. Nothing else. Not Anxiety , stress, nothing could keep me from him except a harsh disease. I wouldn’t be searching and obsessing if I were healthy with no symptoms. But this illness has broken me.

- If anyone reads my dysphagia symptoms unbiasedly, they cannot say it’s not highly highly suspicious. Take away the anxiety bias and it Speaks for itself

- So why do I search so much?

- Because Despite being an outgoing, very sociable guy, with a large circle of friends that I didn’t see much tending to my son I had major stressors throughout life.

- highly critical And stress inducing father, police officer for 12 years, high profile high pressure gouvernement job, successful overachiever, custody battle costing a ton, living in friends basement and no car for a year, moving 5 times in 4 years to better accommodate my son, financial ruined that I finally rebuilt this year to enjoy future travels with my son, Mom passing in 2014 with me by her bedside 24/7 for 10 days while she passed away as I kissed her forehead And IBD diagnosis in 2018 the same year I foolishly convinced my father to move to our location and he became a terror. Primary loving and nurturing care taker of my son for 7 years and doing a ton of activities with him non stop.

but I never let my son see the stress. Unlike my childhood I wanted him to Have a calm Setting and he is. I would talk to him not constantly scream and criticize. I built him up.

- I search And search and search Al because I want to believe in my heart that all those years of stress and allostatic load and cortisol running through my body didn’t cause my son and I to lose each other for possibly 20-25 years. Lose the incredible love and bond. His birth was my rebirth. I had so many dreams for us.

- I tried antidepressants 3 times for stress and each time I got terrible ringing in the ears that got worse each time and stayed that way. What are the odds. Maybe those pills could have saved me. Calm the nervous system. I only started mindfulness in 2018. Too little tolate.

- now all websites say the cause Is unknown and mention some environmental factors but none mention stress as a factor.

- some of your members do, the als net forum has several members say they were very stressed at onset, some say they’ve been in trials where the vast majority of the pals said they were under heavy stress at onset

i was under a lot of pressure home schooling and working for 30’days straight when onset hit

- and although the official sites never mention stress, they do now mention oxidative stress (cellular stress) as a prime Actor but they don’t say what causes it.

So I dig deeper and see that chronic stress can cause oxidative stress, glutamate excitability and Microglia dysfunction etc.all linked to this heterogeneous syndrome. It doesn’t take a rocket scientist to put the two together.

- so my heart sinks and breaks. Although the main websites never mention stress, indirectly as described just above a strong case can be made. I will never forgive myself in this world and wherever the next place takes me. Never forgive.

- one survey research says stress not linked to ALS while two more rigorous studies show that stress disorders are over represented in pals. That als diagnosis Is seen up to 4 years after stress related diagnosis.

- they spend no money on als research. But stress has been linked to PD, AD where tons of money is injected for research Why would ALS be different? It may have many triggers but heartbreakingly I’m convinced stress is and hate myself for it (have never said that about myself in my life ) for not having tried to better manage the chaos that was thrown my way or avoid if. I tried but had I read more scientific journals I would have known more biologically how toxic stress is on the brain.

- I searched and searched to try to prove I didn’t cause this Al. And to be honest I failed in proving I didn’t cause it and my pain is intolerable. Excruciating. I had finally found my true purpose. Fatherhood of the only son I would want. No other son. Just mine. He is perfect son for me. We did everything together. It was all about him.

- i cannot wrap my head around the thought of losing each other so young. 49 and 7. Mind blowing. I will miss his entire life

- Before concluding, some will say you had a vulnerability. Fine. Maybe. But had I managed stress better or somehow avoided them, I would maybe not have triggered that susceptibility and see my baby grow up. Now another man will raise my boy, which I’m grateful for my son having a male figure but I was always and wanted to remain his primary love , confidant and care taker. Shattered.

- lastly, many will say you had 4 EMGs from 3 different doctors. If I’m honest with you, my dysphagia was so bothersome and the thought of losing my son and he losing me made me so anxious that I could Clearly see, hear And read All 3 doctors showed anxiety biased when dealing with my throat despite an occupational therapist, my GI and a video swallow showing dysphagia. (Non ENT, GI related).

- and yes as top NM doctor said and finally as one of the 3 NM I saw admitted, EMGs can be done too soon, especially in an atypical cases that don’t affect the feet, hands or slurring which is what the top Neuro and others said they see the majority of the time. The timeframe they use is 3 EMGs over a year to be safe.

and the majority of patients come in when they have clinical weakness Usually 12 months in which is a shoe in for EMG. I had my first EMG 1 month in after atypical symptoms and my last one was 6 months in. Top neuro said he has seen it take 12 + months at times.

So all this Al is to say I prayed to find proof that chronic stressors through life and increased allostatic load didn’t trigger it. And it breaks my heart into a trillion pieces every second of every single day to know in my gut that I shortened my life and stripped my incredible loving son of his loving Dad.

i only had one wish and dream in life. To continue raising my beautiful boy and build on the unique and Unshakable love and bond between us.

I will never forgive myself on this earth and forever onwards wherever that is. And i don’t want to leave him. I just don’t as I’m sure you all grieve in your own way.

if I were 70 ok. At least i raised my boy. But 49! And 7!

now you know why I have obsessed. If I could somehow say, it wasn’t my doing , it would destroy me Nonetheless but I could chalked it up to fate. This was preventable. Unforgivable.

and living alone having devoted my life lovingly to my son, I’ll end up in a LTC facility and we know how that ends.

some friends have told me not to be hard on myself. I can’t. I should have found a way to slow the chaos down or avoid it.

ps. I’ve attached my symptoms. Top NM said they some atypical but not uncommon.

I will only post again to share findings. Thank you for allowing me to express my Deep deep pain. I will never be able to go in peace. I just love my son too much and we are too young. I am obsessed with my son Al, so if I knew in my heart it wasn’t this syndrome I’d be obsessing over my son all day long, believe me and not over this.

Even my GP who thought it was all in my head without seeing me in Person now did 180 and speaks of “illness” and how to maintain longevity without mentioning the three letter acronym apart from using it to say I have many symptoms his pals do

Thank you again for letting me express and for taking the time

AJ
 

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Bestfriends14

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I think it's best that you find someone to discuss your fears with. You're posting incredibly long responses to folks who are terminally ill, who actually have this disease (you do not), who have told you your symptoms are NOT ALS.

I'm sorry you are going through what you're going through, but it's nothing, absolutely not comparable to the day to day issues that ALS and their caregivers go through. Please try to remember your audience- dying people and their caregivers.

Again, you do not have ALS, so it's really and truly best to speak to a professional about your focus on this one particular disease. As well, continue to work with your docs. I hope you see the silver lining that you do not need to be here.

Best of luck to you,take good care, and stay safe.
 

lgelb

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You spent the first half of this very long post attempting to link ALS to stress. Sure, stress can exacerbate almost anything. Its presence is hardly definitive for any other condition, let alone a comparatively rare one.

Clearly, you're stressed, and I'm sorry for that. But you're making the enormous leap that you not only have ALS, but that you've caused it. That, not anything else, is what's most abnormal about your story.

Per the records you posted, you are on two antidepressants (Remeron, Effexor) and one drug (Abilify) typically used in disorders of thought, so you'll grant that we may not be able to take everything you say at face value. But we're not the point. You need to be able to be truthful with yourself. That's something we can't help with, but there are many people out there who can.

The notion that EMGs can be done too early seldom proves out here, least of all after four tests. This last neurologist that you say mentioned it can take 12 mos for a florid EMG was speaking generally about a rare occurrence, I'm sure. The notion that rarity could apply to your myriad self-reported symptoms, which we didn't think added up to ALS in the first place, is a stretch beyond reason.

Speaking of which, a GP who amends a diagnosis based on self-reported symptoms alone in the absence of new objective information is not worth your time.

I hope you find the help you need, but it's not here. Accordingly, I'm closing this thread. Please do not start another. For your own health and your son's wellbeing, please seek counseling specifically for health anxiety, which can only improve the issues you have identified as relating to physical health. On the web, you can find resources such as NoMorePanic, which has an ALS-specific section.

All the best.
 
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