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Jaycee

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Dear all,

Thanks to a wonderfully useful website to those who are affected by this horrendous disease. I do wonder if anyone who has been diagnosed with ALS has had the following course of events which I'm currently going through.

My current situation is as follows:
I am a 29 year old male who is fit and active, and recently moved abroad to seek a quieter life - and so I wouldn't consider myself as an anxious person.

I've been experiencing difficulty swallowing both to solids and liquids (at level of throat/upper chest) for the past 3 weeks which hasn't improved one iota. There is a definite constant "lump in the throat" feeling along with difficulty coughing up/getting rid of saliva at back of my throat which in itself can sometimes trigger a cough fit (aspirating?). I have struggled to stay asleep without saliva trickling to the back of my throat. I have no fevers nor feel infectious. It almost feels like one half of my pharynx is paralysed. For example, when I breathe out from my nostrils there is an audible "grunt" on the left side of my throat. This, to me, in itself sets alarm bells ringing to an underlying neurological disorder and am dreading the time I will develop a chest infection at this rate.

That being said, at the moment, I am still just about managing to go to the gym and lift weights but keeping foods down has been a real struggle (I'm taking over an hour to eat a half-decent meal, and am sticking to mashed/semi-solid foods mainly) with a near-constant mild upper chest discomfort. Looking back I've may have struggled to fully articulate words at times to my colleagues for about a month (i.e. having to repeat myself) which I did not take notice at the time. I have checked my tongue (for what it's worth) and it is moving in all directions with no obvious weakness - same with my uvula, but there is always saliva visible at the back of my throat which I just can't cough up. My breathing rate and depth feels fine.

I've seen my GP who is trialling me on a course of antibiotics and lansoprazole which I am dubious will resolve this (says there was some "inflammation" at the back of my throat ) and if no improvement will refer me to ENT.

I've had the odd fasciculation here and there which I don't think were relevant (I've had them since I was a child).

My plan is if ENT don't reveal anything significant then I will push for a neurology referral +/- speech and language therapist.

I know Christmas is around the corner, and it might be early days yet, but at the moment I can't help but think that this may be my last one as a healthy human being, and that I will end up moving back home to spend my last days!

Thanks.
 

lgelb

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An ENT diagnosis is much more likely than anything neurological -- for example, a salivary gland lesion. You're jumping ahead quite a bit, it would seem. Don't overshadow the joys of the season with thoughts of a diagnosis that has hundreds of higher-likelihood dx ahead of it.

Best,
Laurie
 

KimT

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Acid reflux and/or hiatal hernia are two benign causes of many similar complaints. I've had both for over 30 years and had to stop all caffeine, chocolate and other trigger food. If I had your complaints, I would see an ENT.

Nothing about your post screams neurological or ALS.
 

Jaycee

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Hi everyone,

As hard as I've tried to distract myself from things (just come back from music festival), I have since noticed fluids coming up my left nostril after eating/drinking - and not just once. My voice doesn't sound "wet". I also experience more laboured breathing shortly after eating a meal which then dissipates.

Kinda freaking out at the moment, and looking up life insurance and formulating a bucket list at the mo, I do wonder if I should simultaneously ask for a neurology appointment rather than wait for ENT to do their tests given my new symptoms?

Apologies in advance if this violates any posting etiquette.
 

Atsugi

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Smart people who know ALS really well have told you that your posts do not contain any reason to think you might have ALS.

This last post you wrote has nothing whatsoever to do with ALS.

See your ENT. Good luck.
 

Jaycee

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Hi all, just an update having just seen my ENT - he didn't really say anything useful other than ordering a barium swallow (which frustratingly I have to wait for another month) and thought my vocal cords looked mildly inflamed.

More concerning though however is that during this month I have developed more symptoms:

- I have lost strength of both my ring and pinky fingers. They just... happened overnight one week after another. Those fingers have become very stiff and tremulous (not the others). Playing guitar is an immense struggle now. Even writing and typing on keyboard is noticeably more difficult. While I can curl them ok I feel like its the larger muscles enabling to curl rather than smaller hand muscles.
- Soft palate feels to be very weak, with sensation of fluid coming up to back of my nose sometimes, even when swallowing saliva. When I exhale through my mouth, my breath sounds noisier. My uvula appears to touch the top of my tongue when I close my mouth (without gagging).
- Feels like I'm pooling saliva in my mouth - having to consciously swallow my saliva.
- Fasciculations (visible) have developed all over including my shoulders and forearms which I've never had before.
- I am continuing to cough after drinking thin liquids, as well as constantly trying to clear my throat to be heard when I talk. My diet consists of porridge, home-cooked burgers and nutritional supplements.
- Legs feeling weak (at the thighs), with probably some muscle wasting.

In all honesty, I've more than resigned to accepting my fate here so I will now try and get seen urgently by neurology, once I clarify my eligibility for life/crit illness insurance (I'm currently living abroad). In the meantime still trying to work and live as normal!

PS I do have a medical background, so I feel reasonably rational at this stage.

Will keep you posted.
 
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codyclan

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You may feel rational, but you are really jumping the gun as not describing ALS symptoms. Seriously. Stiff and tremulous fingers are not ALS symptoms. Clinical weakness is the sign of ALS, not feeling weak or stiff. Only a doctor can diagnose clinical weakness. Continue to work with your doc to figure out what’s going on, but it’s not ALS
 

affected

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Jaycee I think you are jumping the gun big time too and taking feelings as a reason to self-diagnose.

Let the process of testing happen, you aren't showing anything that screams, or even whispers ALS still which is great.

My husband died of bulbar ALS and I work voluntarily with local PALS and CALS - you are missing all the hallmark actual symptoms, and reporting all the things people with anxiety over ALS report. Talk your fears through with your doctor please so you can be helped as they figure out what is going on.
 

Jaycee

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So I visited my ENT today (who I must admit isn't the best, but because of where I am rurally, its all I've got) - he says there isn't much he can do or investigate further at this point and has discharged me. I tested positive for CMV and EBV IgG (which indicates previous exposure) and not IgM, and he thought it might be viral. My barium swallow came back surprisingly as normal (though I never had swallowed thin liquids or ate crumbly food which was what triggered my coughing).

I also had an MRI brain and C-spine which was normal (believe it or not, I kinda wish it wasn't!). I then mentioned the sensation of fluid coming up my nose and he then changed tact and said it might be neuromuscular or I chug down drinks too quickly (not the case). He did say my soft palate looked like it rose OK for what it's worth.

Still coughing/spluttering and constantly trying to clear my throat. Still having bouts of inexplicable fatigue even during work. Both ring and pinky fingers still very shaky and weak - if I put a little resistance on them they "pop" into a weird position and I can hyperextend them which never happened to me before (I take this as meaning weak opposing muscles allowing me to do this).

I've got an appointment next week with a general neurologist (now I wish I did this right from the start) 4 hours drive away who has neurophysiology experience - where of course I will be pushing for an EMG. I've taken time off work as sick leave because of all this.

Will report once I've seen him - but my feelings now is I just want to move on - whatever the outcome is.
 
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affected

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Jaycee still doesn't feel the least like ALS and only a doctor can diagnose clinical weakness - you being able to hyperextend a digit is NOT clinical weakness.

A modified barium swallow is a very useful test and they know what to have you swallow (my husband had 2 of these at different times during progression and both were very different tests as they are designed to match the capabilities and what they are looking for).

If you are concerned, you could contact the speech pathologist at your local public hospital and if you say you are experiencing difficulty swallowing you can be assessed. Speechies are incredibly experienced in all things bulbar (ALS or any other cause).

When you see the neurologist, may I respectfully suggest you let him decide what tests you need and what strategies should be considered as he/she will have far more ability to sort this out than you do?

BTW I am in rural Australia too.
 

Jaycee

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Thank you for your reply, I really do appreciate it and I take your point about not trying to influence one's decision making. That was probably my knee-jerk reaction from earlier today.

It's just difficult with this cloud hanging over my head, which has been affecting work to some extent.

Even with the ENT at no point did I mention "neurological", or even use medical terms for that matter, or I'd have pushed for the modified barium/VFSS then.

Will keep posted.
 

Jaycee

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Hi all,

As promised I said I'll post back. So I've just seen a neurologist, albeit not ALS/MND sub-specialist. The whole thing took about 1.5 hours.

He felt there was no clinical weakness (though I did say I was physically strong usually) or muscle wasting involved or any obvious soft palate weakness (bedside only). All reflexes were normal. Babinski/Hoffman's negative. He then proceeded to do NCS on both my legs and right arm which were completely normal.

He then did EMG (bloody painful!) on both sides including my "weak" little finger area (but not my tongue or sternocleidomastoids - he felt it wasn't necessary and I didn't push for it).

However he did say there was "acute denervation" over both my gastrocnemius muscles, even though ironically they are one of my strongest muscles and I could stand on tiptoes/balance on each foot. He asked if I had low back pain/sciatica, to which I said yes (on and off) and he said it could be that but will MRI my lower spine. I did manage to hill climb over the weekend though...

I then asked if my MRI was normal then what's next and he said he'll review me again in 2-3 months with repeat EMG. I'll get the full report next week.

His overall impression (at this stage) is that it's not MND and thought my "bulbar" symptoms may be just viral (though I wish he tested it a bit more).

I don't feel I'm over the woods (given he didn't EMG my bulbar area and the "acute denervation" finding). Is there any use in pursuing an MND/ALS specialist for now?
 
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codyclan

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No, no ALS. Be grateful and pursue other causes. Sounds like a thorough exam and a responsive doc. Just FYI, my husband was bulbar onset but they did NOT do an EMG in the bulbar region. His back and arms were free of symptoms and yet the EMG picked up on issues before he had any noticyprpblems in the areas. With regard to ALS, you are out of the woods!
Best of luck,
Tracy
 

affected

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I would think you should pursue this with him as it sounds very much like anything else but ALS/MND.
Acute denervation in one area certainly points to something else and he is moving to the next appropriate tests.

You don't really describe bulbar ALS anyway, I know you have some swallowing problems, but ALS is not the only cause of swallowing issues, just like brain cancer is not the only cause of headaches.

Let us know what the diagnosis turns out to be, but let this go and let your doctors do their job now - they have the expertise to figure out a path without you pushing for an end result of your own. All the best - I'm so glad you have such a great result so far!
 
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