Bulbar als

[Elen]

I've said before and I will say it again I find Josh's responses to me to be rude. i just wouldn't comment on someone post if I felt the way he does.

His comments were rude and totally unnecessary hence they have been deleted and he has been banned from this thread.

If anyone wishes to discuss this please pm me privately and not on the forum.

Elen

[swajj]

I've read many of your threads. I didn't see Josh's posts but I would say that they were the result of absolute frustration. At times I've given you what I consider good advice. I've seen others here give you excellent advice. To be honest it seems that none of the advice you receive has any impact on you at all. Like someone else said it's almost as though you want people to confirm that you have ALS. Of course, I know that you don't want that. What you are waiting for is someone here to say the "one" thing that will reassure you that you don't have it. That isn't going to happen. Stop sitting around waiting to die and go out and live your life. My psych once told me that I should stop being afraid of dying because I was already dead. So are you. Think about it.

[Fishmanpa]

I've read many of your threads. I didn't see Josh's posts but I would say that they were the result of absolute frustration. At times I've given you what I consider good advice. I've seen others here give you excellent advice. To be honest it seems that none of the advice you receive has any impact on you at all. Like someone else said it's almost as though you want people to confirm that you have ALS. Of course, I know that you don't want that. What you are waiting for is someone here to say the "one" thing that will reassure you that you don't have it. That isn't going to happen. Stop sitting around waiting to die and go out and live your life. My psych once told me that I should stop being afraid of dying because I was already dead. So are you. Think about it.

The ALS rabbit hole is brutal on the sufferer as well as those around them. And yes, it seems like no matter what is said, the ALS fear sufferer argues with all their worth coming just short of "I'll prove you wrong". Thus the many multi page threads on the subject. It's incredibly sad to witness and the frustration is evident.

Swajj, your psych was spot on and it echoes what I've said many times here. I have real physical issues that can put me six feet under. Many here are already that way above ground. The difference is that the treatment to overcome it is far less difficult and physically painful than what I went through I assure you.

Positive thoughts

[MyNameIsTerry]

I've read many of your threads. I didn't see Josh's posts but I would say that they were the result of absolute frustration.

Not good to make an assumption without seeing the wording, swajj.

---------- Post added at 12:21 ---------- Previous post was at 12:20 ----------

What does SSDD mean?

Same Shit, Different Day.

An alternative to Same Old, Same Old. Just a turn of phrase.

[tryingtosurvive1]

Neurological tests are pretty sensitive. I have hereditary neuropathy (a legit neuromuscular disorder, though not a deadly one) and it popped up on the nerve conduction study. Similarly ALS looks VERY distinctive on EMGs. If your EMG is normal, you're normal.

Does it help to say the "what about bulbar? did we forget about bulbar?" fear is part of the ALS rabbit hole? That's why on aboutbfs.com there's a joke "no, it's not bulbar." It's really not.

[LE]

That's


I have been trying not to post but I definitely am slurring more and more words. It frightens me and I hate it. It's getting to the point I hate hearing myself speaking. The words just are not my normal.

---------- Post added at 22:10 ---------- Previous post was at 22:09 ----------

I genuinely think there is something wrong. If it's not als then there is something not right.

[tryingtosurvive1]

Has anyone else notice this or it is only your perception?

[nivekc251]

This happened to me . I would stumble on words and wouldn't pronounce things accurately. It seemed like I was trying to say the word in NY head and then say it aloud and 30% of the time I would slur it. The more you think/ worry about it the more often it will occur.

[LE]

Has anyone else notice this or it is only your perception?

No one else has noticed it yet. Yesterday a man asked me if I knew where I cash machine was and I replied saying yes there is one just along at the newsagents. The last part of agents came out funny. I was speaking on the phone to a Forbes last night and I was saying my daughter might complain when my son goes on a play date as she will be left on her own. The own came out funny.

I can say the words individually. They sound fine. But I'm finding words are running together at times when I am speaking in sentences.

I honestly believe things are progressing. A few months ago I would notice the odd word sounded funny and not every day. Now it is everyday. I can still whistle, puff out cheeks etc. But my lips look bagy too not as tight. My tongue also does not look as it did in December for example.

I know I have anxiety but I believe something is very wrong and that it is being passed off as anxiety.

---------- Post added at 07:39 ---------- Previous post was at 07:35 ----------

This happened to me . I would stumble on words and wouldn't pronounce things accurately. It seemed like I was trying to say the word in NY head and then say it aloud and 30% of the time I would slur it. The more you think/ worry about it the more often it will occur.

Is this still happening to you?

I do know I am very focussed on my speech. I hope and pray that is all it is byt thigs seem to be getting worse.

[nivekc251]

No because I noticed what I thought was a dent in my calf and started freaking out about it and my bulbar worries went away along with the speech difficulties. You have to get control over this because this ALS anxiety will ruin you. Enjoy the day and don't let this fear bother you