Bulbar symptoms

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Rickopj1989

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Hi guys,

In a nutshell I've had body twitching for over 9 years which pretty much have been everywhere on my body. I've had MND fear on and off. I saw a neurologist about 8 years ago and got diagnosed with BFS.

Over the past two years I've developed swallowing problems. Not being able to get rid of phlegm in the back of throat in the morning and certain foods not going down and taking multiple swallows and drink. Last week i started slurring and not being able to enunciate words and it came on very sudden and has been bad every day since. Iv spoke to the doctor and hes moved me up to urgent to see a neurologist as my previous doctor said he wasnt worried.

I wanted to know if anyone else had swallowing problems first? Then quite sudden speech problems? I can actively feel my tongue not doing what I want it to but the severity is up and down throughout the day.

at this point i cant see it being anything other than this disease and am quite pragmatic about it.

I'm 33 with 3 children and due to be married in march
 

Bestfriends14

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No, my husband started with slurred speech, then choking on thin liquids. To date, he's never choked on food, yet he feels totally fine, but his tongue simply isn't working anymore.

To me, you're nor being pragmatic about this at all. You are continuing your nearly decade long fixation on a disease you've been told you don't have (most likely been told several times). You have three kids? Go live your life for them. Children need a strong role model in order to grow into healthy, confident adults.

in addition, since you've spent a majority of your twenties, and now into your thirties, worrying about having ALS, might I gently suggest talking to a professional about where these fears came from? You'll get much further in getting back to a more healthy mindset then you will chasing a disease you don't have. Again, you have three children; get well for them.

Good luck to you
 

Rickopj1989

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Iv not thought it for 10 years I never knew what the twitching was it's only the past year iv thought it could be als as the swallowing has gotten worse and now the speech is quickly following. My legs and arms feel very stiff and the twitching is everywhere.

When I see the neurologist and if they rule it out I will happily believe him. Just when you suddenly start slurring words and it's constant every day you are bound to think something is going on.

I appreciate your reply
 

Bestfriends14

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And I quote "I've had MND fear on and off. I saw a neurologist about 8 years ago and got diagnosed with BFS." That sounds like you have thought about it on and off, hence, my assumption. When the neurologist tells you no ALS for the umpteenth time, I do hope you believe him/her and be there 100% for your kiddoes.

Please update once you speak to your neuro. Good luck.
 

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I would be concerned about having had a small stroke. Has that been checked?
There are many causes of speech issues, so take a breath, and hopefully the neurologist puts your fears to rest.
Coming here really won't be a good move for you, because until a qualified doctor starts talking ALS, being here is just a rabbit hole.

I will ask you one question - are people telling you that you are slurring?
 

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It is very easy to turn some combination of allergies, GERD, dry mouth, fragmented sleep, anxiety into "bulbar symptoms" that are not. Presuming neurological disease is ruled out, as I'd expect, I'd turn your attention to these kinds of possibilities.
 

Rickopj1989

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Having really hard time with swallowing, only with food not liquids. Feels like my throat muscles are just not pushing to food down, anything dry it's just not happening. I have to drink to make it go down. Tongue keeps feeling incredibly fatigued and not moving as it should when talking. Constant phlegm in throat that I can't swallow.voice becoming hoarse. Still no update on neuro appointment.
 

Nikki J

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Sounds like you should be talking to your gp about seeing an ent or maybe having a swallow study. There are many more likely reasons for swallowing difficulty. You are hurting yourself by focusing on ALS
 

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Definitely have a modified barium swallow study done - they are amazing and will show exactly what is going on.
 

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You really cannot let go of ALS and its terribly sad. Your symptoms are absolutely nothing like bulbar onset, yet you won't believe the folks here, nor the multitude of doctors you've seen in the past decade. It makes me wonder how many other terminal illnesses you think you may have had.

For the sake of your kiddoes, please talk to someone about working on letting this go. You'll get much further ahead than focusing on a disease you don't have. I wish you well in your health
 

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Rick, maybe this can be sorted out with some thought and reflection...

"I'm 33 with 3 children and due to be married in march."

Apparently or maybe you are divorced and have been raising three children. Fear of failure, possible future
failure (soon getting married, subconsciously looking for an out) can cause Health Anxiety. The best doctor
to help you, with an ENT, would be a Psychiatrist... or some kind of professional counseling. It just might
be what a Neurologist would recommend being you have been troubled with this for over 8 years and
now have a fixation on ALS. Like, Doom Syndrome... a Health Anxiety symptom.

I really hope you find the help/cures you need, for your three kids and your future wife. Think.
 
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Rickopj1989

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Couple of weeks on, hoarse voice, all food feeling like its stuck below Adams apple, things like chrisps or dryer foods difficult to swallow. Constant phlegm at back of throat can't swallow it. Feeling really low atm as just getting worse. The slurred speach comes and goes depending on how much I talk, the more I talk then it seems to fatigue my tongue and I begin slurring. Muscle twitching and cramping are everywhere and getting worse. Arms are getting very quickly easily fatigued when holding things. Still no update from doctors on neuro appointment
 

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What did the swallow study show?
If you had ALS they would have you in for testing and update you on dates for that. No update and appointments really is good news.
You need to go back to your regular doctor, we can't do anything more here. Do let us know the results.
 

Rickopj1989

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Iv not had a swallow test as I can't get into see my GP and still no update on neuro appointment. More and more food is getting caught in my throat. Not choking but defo not going down until I drink something to flush it down. I can actively feel my swallow not working properly.
 

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Please cease from updating on your non-ALS symptoms. It's really not fair to the folks here as they are dealing with so much as it is.

Please update only AFTER you've seen a neurologist and been given an answer. Like you've been told many, many times-your issues are not ALS. Please go live life for your children, and get help for your nosophobia disorder.

Good luck to you.
 
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