Ughh!! Bulbar onset ALS!! Why???

[melfish]

Good link. ANDddddddd.....yes......the bit about swallowing and the speech, mouth changes and so were the things I was referring to. My father has ALS and has done for 10 years, I watched him develop dyspahgia and there were subtle additional changes to 'water going down the wrong way'.

You used the word "subtle" twice. I thought ALS was anything BUT subtle. I am sorry your father has this awful disease.

[Carys]

In its early stages yes the changes are very subtle. It doesn't just BAM hit you overnight, one day you can swallow the next you can't, one day you can move a leg , next day you can't. Put it this way....my father (who has had it for a decade now) knew about very small internal and physical changes well before we could physically see them. Some of those changes were as tiny as feeling a tiny piece of food kept getting stuck in a specific part of his mouth when chewing. This is what I refer to as subtle. Admittedly his form is very slow progressing (however he is totally locked in now), but the same applies to even faster progressing forms; there are very minor almost inperceivable changes at the start.

[melfish]

Hmm, again, I'm sorry about your father, but that's not the most helpful thing to be writing on a HA board imho. How does this help the OP?

---------- Post added at 11:51 ---------- Previous post was at 11:50 ----------

It also contradicts everything I've read about ALS and the experiences of PALS and CALS on the ALS boards, who very much emphasise that changes are abrupt and dramatic. Perhaps you father's case was an exception.

[Carys]

My father is fine, as am I, life goes on. Thanks for your comments though. It helps, I believe, because the OP simply doesn't have the things that would have occurred before the swallowing difficulties, the subtle changes I refer to. I amnot the only one to make note of those changes, a link was posted by another user further up with full ALS details. Those small changes that an ALS sufferer would have had in other parts of their face/mouth/speech and so on, by this point if swallowing was being affected, haven;t occurred. It is the lack of them, that means the OP has HA and not ALS.

If the OP had swallowing problems (dysphagia) to the extent that water was aspirating, then that would not be the only symptom they had, this is what I'm trying to explain. With respect... I think you could be making the OP more concerned by stating that they could still have ALS, and are slightly missing the point. I know lots of people with MND and know how symptoms have progressed, with bulbar progression slight and subtle tongue changes would be occurring, along with speech. The OP has not mentioned them, but they would have occurred if they already had dysphagia.

[melfish]

Where did I state the OP could have ALS?

[Josh1234]

In its early stages yes the changes are very subtle. It doesn't just BAM hit you overnight, one day you can swallow the next you can't, one day you can move a leg , next day you can't. Put it this way....my father (who has had it for a decade now) knew about very small internal and physical changes well before we could physically see them. Some of those changes were as tiny as feeling a tiny piece of food kept getting stuck in a specific part of his mouth when chewing. This is what I refer to as subtle. Admittedly his form is very slow progressing (however he is totally locked in now), but the same applies to even faster progressing forms; there are very minor almost inperceivable changes at the start.

This isn't true. Many people DO overnight have something stop working. It's a disease of the nerves, not the muscles, and everyone progresses differently.

[Carys]

Sorry, but I honestly am very confused by this conversation. I and another person were simply pointing out that the OP doesn't have other symptoms, that they would have if they had dysphagia. It was an attempt at reassurance. There is a link detailing ALS symptoms by another poster, detailing exactly the same symptoms. You indicated that I wasn't being helpful in detailing those changes on here...but I figured I was as they don't HAVE THEM.

I thought by countering my statements, saying they werent helpful, adding that it could be dramatic and that you had read differently on the ALS boards...it could fuel the OP's fears. I think there is some sort of misunderstanding here, so shall we leave it at that?

---------- Post added at 20:19 ---------- Previous post was at 20:17 ----------

Rubbish Josh, sorry, I'm not getting into this anymore....no people do not 'overnight' have something stop working. Even if you had the quickest of all forms, it doesn't just go BAM a leg has stopped working the next day. It may be fast for some people (with the average being 3-5 years of duration) but it isnt so fast that one day you can swallow and one you can't ! I'm leaving this now, as I really don't see how this is at all helpful to anyone with HA.

[melfish]

I've read FMP's thread multiple times and it is very helpful but shares little with your posts. By repeatedly stating how subtle and slight the symptoms are, you are instilling nothing but doubt in people who fear this disease. I know, because I am one of them.

[Josh1234]

Sorry, but I honestly am very confused by this conversation. I and another person were simply pointing out that the OP doesn't have other symptoms, that they would have if they had dysphagia. It was an attempt at reassurance. There is a link detailing ALS symptoms by another poster, detailing exactly the same symptoms. You indicated that I wasn't being helpful in detailing those changes on here...but I figured I was as they don't HAVE THEM.

I thought by countering my statements, saying they werent helpful, adding that it could be dramatic and that you had read differently on the ALS boards...it could fuel the OP's fears. I think there is some sort of misunderstanding here, so shall we leave it at that?

---------- Post added at 20:19 ---------- Previous post was at 20:17 ----------

Rubbish Josh, sorry, I'm not getting into this anymore....no people do not 'overnight' have something stop working. Even if you had the quickest of all forms, it doesn't just go BAM a leg has stopped working the next day. It may be fast for some people (with the average being 3-5 years of duration) but it isnt so fast that one day you can swallow and one you can't ! I'm leaving this now, as I really don't see how this is at all helpful to anyone with HA.

This is just false, sorry. It can and does happen that way.

[AntsyVee]

I think the point to recognize here is that WHILE some people have subtle decline, AND many people have rapid decline, ALS CAN ONLY BE DIAGNOSED BY A DOCTOR. And if yours says you don’t have it, YOU DONT HAVE IT.

Have a good day, everyone!

Vee