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Sandylee

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Hello Everyone,

I have been on here before but tried to stay off, last time i logged on was in 2016.

I will keep this short as i have been getting some new symptoms and need some advice.

I have voice hoarseness issues which come and go but my voice been bad for almost 4 months especially my high pitch voice is bad, some doctor said i have Acid reflux but im worried that maybe its because of weakness in vocal cord or disfunction.

I have trouble swallowing, with water i feel like i will choke if i drink with bottle or glass and usually clearing my throat often after drinking, with straw it seems easier but also sometimes feel discomfort, also with food sometimes some piece seems like stuck or have to take two swallows or drink water to take it down, never had choking attack though for either but feels like almost going to happen few times and have to quickly clear throat or cough to avoid it , also i have bad cough which they also said due to Acid reflux or allergies.

Muscle tightness in throat and feel like twitching or spasm with a bit of pain in neck and inside throat, also twitching in right arm and hand, a long with left leg, no real weakness but feel weak.

Last appointment with Neuro said everything looks good such as strength and other examination.

Sometimes breathing issue but lung doctor did lung function testing and said my Lung was Grade ( A ) in terms of functioning.

My tongue moving fine, no weakness, sometime issue with speech but nothing obvious, can whistle, blow my checks out, say La La La, can stand on my toes and heels.

Should i be worried or be on my way? can throat and neck muscles twitches be benign also ? also what would real issues with swallowing present themselves like and would chronic coughing be a sign of ALS as well ? and lastly would Lung function test show weak respiratory and chest weakness ?

my symptoms started almost 2014 and i had emg's before without any evidence of disease ?

Thank you for listening
 
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lgelb

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Hi Sandy,

A lung function test would have shown any respiratory difficulties attributable to ALS.

The twitches are not worrisome.

I would pursue new or better treatment for the reflux, including H. pylori testing and any drugs that are needed.

Best,
Laurie
 

KimT

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Sandy,

I have had acid reflux for over 20 years. Everything you mentioned was consistent with acid reflux.

You can see a gastro or an ENT. I went to an ENT at Mayo Clinic and they looked at my throat, checked my vocal cords, and did a swallow test. Total time was about two hours. They confirmed it was acid reflux.

My niece also has acid reflux and her voice is hoarse most of the time. There's a book called Dropping Acid and it is a lifestyle change to deal with reflux.
 

Sandylee

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Hi everyone,

Thanks for the great advice and it makes complete sense , definitely puts my worries at ease, they have given me medication for acid reflux for many months but it doesn’t work well , but as KimT suggested I think it requires a complete lifestyle change for it to improve, will look for the book you mentioned online. Also Thanks Laurie for the good explanation , very helpful and I will look into the thing last you mentioned as well.

Actually I have been to the ENt’s as well and from their camera evaluation they said my vocal cords were functioning normal ( no paralysis or curving ) but redness and inflammation around the area due to acid reflux.

I think the reason I came back on here and asked was because I unfortunately read some of the comments on the forum from some PALS that mentioned how their bulbar symptoms ( hoarseness, swallowing , breathing issues etc started, and it took some time to diagnose, I guess the similarities in some of the points made me freak out, however I do understand that my symptoms started almost 4 years ago and my investigation started from a neuro side of things, rather than started from investigating something else which led to a neuro and a ALS diagnoses , I guess bottom line is people who are genuinely suffering and have ALS didn’t even think in that direction at first and went to doctors complaining about swallowing issues or muscle weakness etc , they were investigated from normal issues first which showed signs of something serious which led to a specialist and a diagnoses.

So anyways from your very nice and helpful answers it sounds like ALS or some kind of MND is out of the question for me, and I’m just suffering from Acid reflux or some other small issues, correct Me if I’m wrong

Thanks again everyone, I must say I truly appreciate and admire you all for taking time out to help others even while your fighting your own battles, may God bless you all and bring an end to this terrible disease.
 

Sandylee

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Wanted to Add a little note for people that have anxiety issues.

Please make sure you get proper medical attention, my anxiety sometimes has led me to doctors that had no proper knowledge and it scared me further.

Just recently i went to a ENT professor in a renowned hospital and explained my voice hoarseness and swallowing issues to him, he tried to see my throat with a mirror but my gag reflux was too sensitive, he was unable to use an endoscopy as he said he wasn't familiar with it and needed me to see another doctor, i showed him a video of my previous visit to another ENT who had said everything looked ok, after he viewed the view he said without any hesitation You have Vocal Fold Bowing, i was literally in shock since i knew what that meant and it wasn't a good indicator, anyhow he said i should see his colleague a week later at the same hospital.

I right away took my business elsewhere, went to another hospital found a doctor who specializes in vocal cord issues, she put the endoscopy through my mouth inside, made me say Ehh, cough, even gag and almost vomit, this was all done to prove that my muscles were functioning the way they should, at the end of it she told me everything looked fine in terms of my muscles and functions in the throat, the vocal folds were moving and closing properly, no paralysis, no bowing etc etc...said i had bad acid reflux and my vocal cord were red and inflamed, the so called bowing the professor told me i had from a picture i showed him on my phone was also the swelling, i confirmed this by showing the other doctor the same video and picture.

moral of the story is some doctors without even a proper evaluation use terms that can literally cause us a heart attack, please get yourself checked by good doctors, it doesn't matter if you need to get a second opinion or more, if you arn't satisfied get one, 99.999% of the time everything will be very minor or nothing at all.

I just thought i'd share this story to let people know there's no point getting scared or upset or freaked out, even if one doctor tells you something, always get a second opinion and its very likely it will turn out to be nothing.

Thanks for listening !!
 

Clearwater AL

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Thank you for your closing report. Hope your non ALS health issues get resolved.
 

Sandylee

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Hi Everyone,

Just a quick follow up question, from my understanding ALS and Kennedy’s diseases have a lot in common in terms of the symptoms , my question is since I know a lot of PALS on here were probably tested for Kennedy’s as well to rule out issues, would an EMG, NCV etc pick up issues related to Kennedy’s as well ? Which along with physical symptoms would prompt a doctor to get genetic testing done ?

All my issues started in my late 20’s and I’m male, I’ve had issues for 3 years and had EMGS done back in 2015 and 2016 which were normal apart from ulnear nerve issues, only lately have I had more issues with my muscles, cramping, spasms especially in my chest, neck and throat, voice hoarseness that is not getting better , swollen vocal cords due to coughing according to the ENT but it’s been on and off since September, I’ve lost my high pitch voice pretty much , sleeping issues , jerking myself up when falling asleep like I’m about to choke or a cough is being triggered etc, jaw feels tired and tight along with muscles in my body, chest feels heavy especially when I wake up, I literallly feel like my breathing, swallowing, chewing is not synced like I’m not doing something correctly, also my tongue and throat feel like they’re buzzing or twitching inside ( around the tip and mid sections of My tongue and near the Adam’s apple) twitching in left arm and hand ) other places as well but not frequently) etc etc, I’ve mentioned someone my symptoms before so not going to waste more time, even when I take deep breaths my neck muscles contract like they’re having spasms.

I’ve been to many doctors and neuro’s nobody can diagnose me, strength seems good, reflexes were alright none mentioned they were brisk or absent, do have shaky hands and tremors but not extreme, said I might have essential tremor or maybe it’s genetic, no faculations in tongue at rest , I’ve noted it myself as well with a torch and didn’t see any twitches. Neuro said most likely its fibro, BFS and some other psychological issues.

I trust my doctor but just want to make sure they’re not missing something here, I’m having a lot of trouble with swallowing now which has caused me to loose some weight, honestly the embarrassing part is I can’t go to doctor and say I choke because I never do but I feel like my swallowing process is not in sync, water tends to go down slow and I have to focus on it, throat clearing a lot again feel like I’m going to choke but it hasn’t reached that point, jaw muscles tend to feel tired during a meal, sometime I chew too much, also get excess saliva especially feel it at night before bed, never choked on liquids but throat feels tired and fatigue after drinking water and I have to drink it slow , even with food need to drink water to take food down. I do have acid reflux and taking proton pumps for it but they don’t work well,Etc etc it’s just a very weird and uncomfortable situation for me.

Advise would be highly appreciated , thanks so much for taking time out to read this, God bless you all
 
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