Serious Question

[SOWORRIED]

What are the odds/statistics/chances of a 32 year old getting or developing either one of these:-

RESPIRATORY ONSET MND
BULBAR ONSET MND

Asking on behalf of someone who is worried about their health at the moment.

According to them they have the following problems:-

*Dry Mouth/Lips
*Excessive/Constant Swallowing
*Sometimes a feeling of excessive saliva
*Feeling of a lump in the throat
*Mouth/Throat feels uncomfortable

They have recently noticed they have red and slightly enlarged tonsils most of the time probably after lots of bouts of Tonsillitis over the years.

They also have problems with the following:-

*Dull ache in the Chest even when sitting down (They said they have had this for about 3 months.)
*They feel short of breath a lot but to me they look like they are breathing normally but they said it feels like their breathing is shallow or laboured.
*Excessive Yawning/Sighing.

So as you can see the symptoms are mainly to do with breathing, the chest and the throat.

They do feel tired all of the time as well but there's no weakness in any part of the body that I am aware of.

Should they be at all worried about the above types of ALS? I am hoping that I can reassure them but I need you're opinions first.

As I said at the beginning of this post it would be very informative and i would be very grateful if you could give me stats or information on people aged 32 getting one of these types of ALS/MND.

What are their chances of getting either one at 32? I don't know much about ALS at all or what types are more common but that's why i would like it explained to me.

Thank you for your valuable time.

 

[notme]

ALS at ALL is like 1 in 100k people. Most are over 50. Those symptoms don't sound at ALL like any ALS onset I've ever seen or heard of.

Tell your friend to see an ENT and the family doc for a chest x-ray or a pulmonary function test if they are having trouble breathing.

ALS certainly won't cause red tonsils. If someone is short of breath easily--then they should see a doctor to see if there is something going on in their lungs.

 

[SOWORRIED]

Thank you for your post, Thanks for taking the time to help me here.

I forgot to mention that they have had the Throat issues since around August 2010 and the Chest and breathing issues for 2/3 months.

So not RESPIRATORY ONSET/BULBAR ONSET then in your opinion? That is great if that is the case!

 

[notme]

Thank you for your post, Thanks for taking the time to help me here.

I forgot to mention that they have had the Throat issues since around August 2010 and the Chest and breathing issues for 2/3 months.

So not RESPIRATORY ONSET/BULBAR ONSET then in your opinion? That is great if that is the case!

Barry is the expert on Bulbar onset--but no, those aren't the symptoms. Slurred speech is likely the first thing noticed.

Resp. onset would be extremely rare. Limb onset is the most common--a hand or a foot with clinical weakness. No pain and no sensory issues with ALS--especially early.

Shortness of breath can be a lot of things--and some of them are serious. Asthma, blood clots, chronic bronchitis are a few. Smoker by chance? That makes shortness of breath quite common.

But--I'd think a chest x-ray would be the first order of business.

 

[SOWORRIED]

I need to also make you aware that they did have blood tests, heart trace (ECG) and chest xray done 5-6 weeks ago which were all normal.

 

[SOWORRIED]

Hopefully the Barry guy you mention will pop on here at some point then as his opinion would be good.

The only medical condition my friend has is Asthma.

From your post would i be right in thinking the respiratory form is very uncommon or rare? is there usually a certain age range for the bulbar and/or respiratory form?

As my friend is only 32 i am hoping that because age is on their side that it isn't anything serious.

 

[trfogey]

My goodness, this story sounds familiar.

https://www.alsforums.com/forum/do-i-have-als-als/14761-whats-going-respiratory-pbp.html

https://www.alsforums.com/forum/do-i-have-als-als/13572-what-chances-risks-statistics.html

https://www.alsforums.com/forum/do-i-have-als-als/13603-need-your-opinions-advice.html

Lots of advice given to your friend in the threads at those links. It's a shame he wouldn't follow any of it. It's also a shame he doesn't have anything more constructive to do with his time than to make a nuisance of himself and his tonsils on ALS forums all over the world. Sounds like a very sick way to while away one's free time, but there is no accounting for personal tastes.

If you are his friend, get him to go to a psychiatrist and get some help for his real problems.

 

[notme]

Your friend is young and would be rare. If she has asthma, that would account for the feeling short of breath. She should see her asthma doctor. Seriously--NONE of what you wrote sounds at all like ALS in ANY form

 

[SOWORRIED]

Thank you, I think my friend is very worried obviously because of their throat and breathing but also because of this dull ache they get in their chest even when being sat down but they have had that ache for around 3 months although they have had a chest xray and heart trace done since that first started, i don't know if asthma could be responsible for the ache but my friend seems very worried about the fact that it could be due to respiratory onset.

 

[notme]

LOL, I give up. ALS doesn't cause chest pain. If an EKG and X-ray were normal, have you considered anxiety as the problem? Tell her to see her GP. In any case, good luck. I've tried to reassure you all I can, which apparently isn't helping.

Edit to add: i am not a doctor, none of us here are...but I've had asthma for 30 years. It's also possible she has some kind of infection going on that just needs treated. Pulmonary function test probably wouldn't hurt.

 

[BarryG]

Ok not Bulbar onset ALS. Bulbar almost always starts with slurred speech as the tongue and lip muscles shut down. Later, swallowing problems start as the throat muscles go. Excessive saliva is not excessive at all, it is the result of not being able to swallow the saliva that our mouths produce.

And respiratory onset is even more rare than bulbar.

See a doctor.

 

[Bad Balance]

In my mind;

This is worse than many of the posts that we see on here. Now we have a third party internet "doctor" advising a friend.

 

[trfogey]

In my mind;

This is worse than many of the posts that we see on here. Now we have a third party internet "doctor" advising a friend.

I'm pretty sure that this isn't a third party, BB. Just round 3 for TStewart31/28andWorried with a new user ID. More of an annoyance than a problem, really.

 

[Karvorka]

I've only just joined the forum even though I'm a heavy internet user and was diagnosed with bulbar onset over 3 years ago because I was afraid of encountering people that are praying on the good nature of really ill people; I'm not saying you are one of these types of people but it sounds as though you have your answer and you should move on and quit bothering people who have limited typing strength to be wasting it on repeated questions..

 

[Alastor M]

Chances of acquiring a juvenile strain of ALS are 1 in 6 million. Bulbar onset accounts for approximately one fifth (probably less) of all ALS cases so.....
1 in 30 million, or less.
YOU DON'T HAVE IT. REJOICE
-Alastor