Here again. Questions regarding bulbar ALS.

[rickson407]

Okay, where do I start.

I had posted back in July of this year with my concerns regarding Bulbar Onset ALS. Well I'm still having difficulties initiating a swallow response with food only. I'll chew, chew, and chew my food and it's like my swallow will not start. I have absolutely no issues with liquids at all. I did have a Barrium Swallow Study at my local hospital where I reside and the attending physician said it showed up all clear.

So here I am still lingering with this dreadful fear.

My question is: It has been 7 months since this all started just out of the blue. Is it safe to say that with Bulbar Onset ALS and it being 7 months that I would be showing more signs and symptoms at this point such as slurred speech, etc?

I know that slurred speech is typically the first symptom noted by Bulbar Onset ALS patients, so yeah.

Again, I'm a 26 year old male so I know my age drastically helps me in this case. I just want an insight I suppose from individuals dealing with it.

Praying for each and everyone of you all and God Bless.

 

[rickson407]

Also, I failed to mention how I'm getting 7 months since this has all started because it started in the month of May at the beginning of the month. I just had posted on here in July. Just wanted to clarify.

Really hoping for some replies to this thread. :neutral:

 

[vickim]

Yes, I would think you would be having trouble with speech and liquids by now. I am no dr and if you are truly worried maybe see a neuro and see if they can suggest some tests that may help get answers for you.

 

[rickson407]

Thank you so much Vicki. I mean yes, I'm worried but all the research I've concluded points away. Also, I've been told that my Barrium Swallow test wouldn't have been good if I had Bulbar Onset ALS and true difficulty swallowing. This whole Bulbar Onset ALS fear has really taken over my life at this point. It's ridiculous. Again, thank you so much for your input.

 

[vickim]

Well there is no shame in seeking help for anxiety. Maybe try 6 months of meds and see where you are then. Fear and anxiety can cause true physical harm and can kill in some cases. Might be something to think about.

 

[rickson407]

I just really hate the thought about being put on medication but you're probably right. Again, thank you and God Bless.

 

[vickim]

Unless you can find another way to get over this fear. You don't have to do meds. Can you accept and let go of this fear? Move on and enjoy your life without it being in the back of your mind?

 

[rickson407]

Vicki, I feel as though it is always in the back of my head. If my swallowing issues would just stop that would be amazing and I could let go of the fear but since they have lingered I can't. I am always super focused on doing all kinds of tongue gymnastics, asking my friends and family if they think i'm slurring, etc. I mean the fact that this all came on so sudden... like over night should point away for Bulbar Onset ALS... yes it's progressive but from what other's have said its not that quick. So yeah, I need to accept and let this go. I just need a little kick in the behind so to speak and insight from others dealing with it.. almost like a reassurance type of deal I guess..

 

[vickim]

Hence the medication. It would only be short term, just to get over this fear. There is no shame, it is a medical condition and can cause serious physical problems. Its the brave thing to do.

 

[rickson407]

I agree. I think I'll go back to the doctor and ask about possible options for medication. So your honest good opinion, you don't believe this to be Bulbar Onset ALS since it's been 7 months and no changes? Sorry, I know I sound like a fool. /:

 

[vickim]

Not a fool, just someone with a fear. Don't put yourself down, you are being very brave to move forward. You have had tests that say you have no problem swallowing, so that should be your answer. Be at peace, go enjoy yourself and celebrate.

 

[rickson407]

Thank you Vicki. You have been more than kind and I appreciate that very much. I just didn't want to offend anyone because I know this is a site used for individuals living with ALS or care givers and family members. I will be keeping you and all the others in my prayers. Hopefully, I can go back and start enjoying life. I wish you well.

 

[dalvin]

as an additional help you might look into some sort of support group. your local mental health facility might be able to recommend one

 

[rickson407]

Thanks Dalvin. I'll look into anything that can possibly help me get past this. Again, thanks for the recommendation.

 

[rickson407]

For anyone that has Bulbar Onset ALS can I clarify something please or if anyone knows a lot about Bulbar Onset ALS.

I'll try to word this as best as possible so it can be easily understood.

When they say difficulty swallowing when it regards Bulbar Onset ALS the research I've did says that it's the muscles in the throat not working correctly when the swallow is initiated.. such as the muscle not closing the wind pipe therefore liquid and food can get into the windpipe.. With that being said, it doesn't feel as though you can't swallow right? Meaning like you don't have a problem swallowing necesarrily it's just when you do the muscles in your throat are not working correctly....? I guess what I'm trying to say is mine just feel as though the swallow will not start so to speak. Once the swallow does start the food in my mouth goes down to my stomach and I don't choke and I haven't choked... so yeah.

I hope this makes sense.