What's going on? Respiratory/PBP?

[28AndWorried]

I appreciate all of the replies very much.

You can understand my worries, Things with my mouth & throat haven't been good since September time, A feeling of excessive saliva and having to constantly swallow and when i swallow it doesn't feel right and it feels hard.

The only positive thing i can think of is that things have only got a little worse in the space of 6 months, I'm thinking that if i had bulbar then wouldn't i be choking on everything or be slurring when talking by this point? Bulbar progresses quickly doesn't it?

I have an appointment with my ENT in 2 days time, I'm thinking if it would be worth asking him if he thinks it could be a Neurological problem?

 

[alex scared]

ok i gonna have a go . . To be diagnosed with bulbar onset als or any other mnd variation at the age of 28 would be highly unlikely . . Here in the uk there are just over 5000 people give or take suffererin with motor neuron disease . . 25 % start with bulbar. . Thats approximate 1250 people . . Of which the amount under 30 years old is makes that number even smaller . . Less than 200. . . . . In a population of tens of millions do you realise the odds against you now having this . . Pleease listen to what every one has said to you here because you are torturing yourself. No one here is saying that there nothing wrong but it just does not sound like als in the slightest . . Even if you have breathing trouble slurred speech tongue fasciculation etc it does not mean you have it . . How do i know cos i got all of that and a clean emg ! . . . Please understand that not every single thing that you feel is als . Robynblue is spot on when she mentions anxiety . . It can be a beast . . The only advice i can give you is to listen to your neuro , stay away from the internet diagnosing and try and enjoy life again . . The majority of guys that responded would swap places with you in an instant . I truly wish you peace and good luck my friend and hope that you take some of this in . . . God bless . . Alex

 

[trfogey]

You can understand my worries, Things with my mouth & throat haven't been good since September time, A feeling of excessive saliva and having to constantly swallow and when i swallow it doesn't feel right and it feels hard.

With ALS, it is not how your body feels -- it's how your body fails. It's not a feeling of excessive saliva in your mouth. It's a real pool of saliva that builds up in your mouth because your swallow reflex doesn't work and it causes you to choke and cough when you try to swallow it as half of the pool goes into your lungs instead of your gullet because your gag reflex doesn't work.

I have an appointment with my ENT in 2 days time, I'm thinking if it would be worth asking him if he thinks it could be a Neurological problem?

Ask him if you want to. Don't be surprised if he blows you off like the last one did.

 

[28AndWorried]

I found out last week that i have a strong gag reflex when removing a tonsil stone, I gagged like crazy.

Anyway i went to see the ENT today and he said my tonsils are large and could possibly be causing an obstruction and that because i get throat pain, sore throats and regular tonsillitis along with difficulty swallowing the best thing to do would be to remove them and i agreed and said i will have it done despite the risks of the surgery and hopefully within the next 8 weeks they will be out.

 

[trfogey]

Sounds like you have a plan in place. Good luck with your surgery.

 

[28AndWorried]

Sounds like you have a plan in place. Good luck with your surgery.

Thank you, He never said they were the reason for the swallowing difficulties but i am really hoping that they are, His main reasons for removing them were because of the throat pain and sore throats which are persistent and because i keep getting tonsillitis and tonsil stones.

 

[trfogey]

Thank you, He never said they were the reason for the swallowing difficulties but i am really hoping that they are, His main reasons for removing them were because of the throat pain and sore throats which are persistent and because i keep getting tonsillitis and tonsil stones.

He said it.

Anyway i went to see the ENT today and he said my tonsils are large and could possibly be causing an obstruction

You're just denying that he said it, at least to yourself and to preserve your real purpose in being here.

If you want sympathy here, it's best to work harder to keep your stories straight. Failing that, at least be somewhat entertaining.

 

[28AndWorried]

He said it.



You're just denying that he said it, at least to yourself and to preserve your real purpose in being here.

If you want sympathy here, it's best to work harder to keep your stories straight. Failing that, at least be somewhat entertaining.

No he said it could be causing an obstruction as in breathing especially at night but didn't say whether he thought the swallowing difficulties were a result of the enlarged tonsils all he said was that it is possible but he wasn't sure.

 

[LizT]

its common sense that enlarged tonsils that are causing you pain would contribute to swallowing difficulty, seeings how a regular sore throat often does the same.
A lot of people have taken precious (and i mean that) time away from their own lives to try to get you to see that you arent having ALS issues. You are refusing to listen. So many folks have been more than patient- im an NOT one of them.
Personally, it is really getting on my nerves how much you disrespect the PALS here by wasting their time OVER and OVER.
you continually repeat yourself. asked and answered. but that doesnt stop you.
does it bother you at all that there are folks on here that can only type with one finger because nothing else works- and they keep answering your repeated questions? i would ask for you to stop pussy footing around, come right out, and tell us EXACTLY what you are wanting to hear from us so we can tell you and you can move on.
the fact alone that you keep coming here and wanting us to tell you what it is, when you should be dealing only with LIVE doctors, says alot.
so seriously, what exactly do you want from us? i feel really sad when i see so many folks on here wasting their time (my opinion, of course) on someone who could be out there living their life normally.

 

[momofsixkids60]

AMEN to you Liz

Kimberly

 

[28AndWorried]

its common sense that enlarged tonsils that are causing you pain would contribute to swallowing difficulty, seeings how a regular sore throat often does the same.
A lot of people have taken precious (and i mean that) time away from their own lives to try to get you to see that you arent having ALS issues. You are refusing to listen. So many folks have been more than patient- im an NOT one of them.
Personally, it is really getting on my nerves how much you disrespect the PALS here by wasting their time OVER and OVER.
you continually repeat yourself. asked and answered. but that doesnt stop you.
does it bother you at all that there are folks on here that can only type with one finger because nothing else works- and they keep answering your repeated questions? i would ask for you to stop pussy footing around, come right out, and tell us EXACTLY what you are wanting to hear from us so we can tell you and you can move on.
the fact alone that you keep coming here and wanting us to tell you what it is, when you should be dealing only with LIVE doctors, says alot.
so seriously, what exactly do you want from us? i feel really sad when i see so many folks on here wasting their time (my opinion, of course) on someone who could be out there living their life normally.

Hi Liz,

All i came onto this forum for was to ask a few things about Bulbar/Respiratory MND and whether it is a possibility that i might have one of them? That is all i wanted from here.

If i wasn't having these problems i could be living my life normally but they are affecting me on a daily basis.

I have had some good opinions on here, Maybe you could give me you're opinion?

1.Could my swallowing problems/difficulties be caused by possible Bulbar ALS/MND?

I can also provide the following information, I can move my tongue quickly side to side, up and down and i have a strong gag reflex, speech seems normal as no-one has said i sound different or slur, I can drink tea, coffee etc without choking and can eat ok as well.

There is a feeling of a lump or an obstruction in my throat and i there seems to be excess saliva and at other times it can be very dry.

2.I have noticed that i sigh/gasp/yawn frequently and it seems to be happening more and more, I don't know if these symptoms are in anyway related to ALS/MND but that is why i was concerned about Respiratory Onset ALS/MND and i also feel short of breath sometimes as well, I do have Asthma but that is well controlled and i still seem out of breath quite often, I have had heart and lung checks recently and they were all ok so it's not my heart or lungs causing the problem, Would my Oxygen sats be 97% if Respiratory MND was causing my occasional shortness of breath/sighing/yawning/gasping?

 

[pumpdoc]

Liz, you can lead a horse to water........................28, in my short time here i've never seen someone as closed minded as you are, you don't listen or shall i say read what people are telling you. i'm typing this with one finger, the same one that is now giving you the ''bird'', i don't want to be banned so i'll leave it at that.

 

[LizT]

ok so once again you ask the same damn questions. should we go back to see how many times you have been answered?
If you had bulbar onset, you would sound drunk to people.
you can swallow thin liquids without choking and gagging.
feeling like you have a lump in your throat is not als.
the sighing/gasping/yawning thing... never heard of this being diagnostic of als. i know some pals who are decently far into their diagnosis that yawn frequently, but this isnt an onset thing, or something that points towards als.
your doc has told you that you have tonsil issues. tonsils are in your throat. most people cannot swallow well, or feel that lump when their tonsils are swollen. that is why they need to be removed. listen to your damn doctors.
you say you have breathing issues. um- why wouldnt it be your asthma? just because youre on meds for it and it was controlled before, doesnt mean that it cant be causing issues now. you need to research what your doctors have told you you already have.
so, i have clearly answered your questions. in case i wasnt clear- NONE OF THIS POINTS TO ALS.
Hope you heard it this time.

 

[Alyoop]

1. Large tonsils cause swallowing issues, including excess saliva pooling, and / or dry mouth.
2. Your asthma needs checking. It probably is not well controlled.
3. If you had respiratory issues, it's doubtful that you would have such good O2 sats.
4. Your well trained Doctor says your enlarged tonsils could be causing obstruction, even though you want to read it some other way.
5. Your problems will not be caused by ALS,
6. You have no obstruction if you are not choking, especially on thin fluids.

So I have been careful to answer all your questions as best I can.
I hope your surgery goes well. You have no need to reply to this post, just be very happy that you will not die in the next 1-5 years.

 

[pudge44]

My husband is unlucky enough to have bulbar als NONE of your symptoms and I mean none are similar to his, you sound like you have a tonsil issues, tonsils if infected enough can toxify your body, I would see a ent specialist