just a couple of questions....

[naynaydevil]

i know ive posted here before about twitching, sensory issues etc.

you've all been very kind. i just a few questions---

does the bulbar form of als start with hoarsness of the throat and pain in the ears and throat. ?

ive had a viral thing as dr's call it for 3 weeks almost, with sore throat and ear. sometimes i have trouble swallowing (which im attributing that to my awful anxiety)

but my voice for 2 weeks has been hoarse/shakey. does this sound like anything? sorry to bother you folks again.

 

[BarryG]

Bulbar almost always starts with slurred speech as the tongue muscles lose function. Hoarseness comes much later and a sore throat and ears do not come into the symptoms.

 

[Jellycat]

Can't say if all bulbar als starts like this but my pals started with an occasional slur in her voice, then a slur late at night every night, then from afternoon, then all the time, then loss of articulation in certain words, then all, then just sound possible. She had no pain in her throat but swallowing issues started alongside slurring or maybe a little while after.

Perhaps the shakey voice is related to the virus?

 

[LizT]

you have a sore throat and ear and are asking if your hoarse voice may be bulbar onset ALS?
But you have a sore throat. And the dr said you have a virus. and you have a sore throat.
plus, you have a sore throat.... how b****y of me, really. But

 

[naynaydevil]

oooh ok..so the hallmark of bulbar onset would be slurred speech, not the way your voice sounds (at first)) sorry i was confused. i also heard someone say before that als isn't painful. so a sore throat/ear wouldnt be part of it anywyas?

sorry lizT...thats why i ask questions. i know alot of pals are misdiagnosed before actually getting it correct and i get concerned

 

[LizT]

i should be the one apologizing. i dont mean to be b****y- sometimes i just dont understand how folks connect things.
I will stay away from this particular section until i can be more supportive. youve got the right to ask.

 

[naynaydevil]

no its ok lizt. i understand you folk's frustration, getting all these stupis questions all the time. ill admit im very uneducated to the disease, so when i rely on google after i punch in my symptoms thats all i know, so i come here for real answers.

 

[trfogey]

no its ok lizt. i understand you folk's frustration, getting all these stupis questions all the time. ill admit im very uneducated to the disease, so when i rely on google after i punch in my symptoms thats all i know, so i come here for real answers.

You should be taking all of your medical concerns to your family practice physician, not bringing them here. If you don't have a regular family practice physician, try your local hospital emergency room or your county health department for a referral.

Not Giggle. Not any other Internet search site. Not any other Internet medical site. A doctor. A living, breathing, in-the-flesh, and highly trained physician who can examine you and guide you to the help you need.

 

[tlynne]

Then, please tell me, what's the purpose of this "support" group? Let's lift each and every one up!

 

[BarryG]

Sometimes the best way to lift someone up is to smack down their irrational fears. Of course we try to do this in the kindest and nicest way but often people aren't willing or able to listen.

The best support that we give here is to people who have been diagnosed with a real live doctor and are trying to deal with the awful reality of what this disease does to us and our loved ones.

 

[hopingforcure]

I still remember the people who wanted the do I have ALS section on the forum, it seems like forever ago.. But I will reiterate that these people all ended up NOT having ALS... I think after we have seen so many people come here with fear's that are unjustified and plain ridulicious, that we just get so frustrated. I think these same people hurt those who are really ill. These people do the same thing with Doctor's, and then when someone is has a legitimate ALS concern they are pushed aside.
If you have a MND you will have a very good idea that something is wrong, you will be weak, if you have to question that you have something wrong, well then you most likely DO NOT. I have spent at least four years on the forum, everyday, and have watched the people with irrational fear, almost break the spirit of giving, support, caring, and knowledge that this forum is about. While I feel that everyone is welcome, in the end we are only as good as the people who make up this forum, and we need those who come here to realize this. I feel like if a quarter of the people who come here, would support ALS research, a cure would be on the way. Remember that we are here for support of PALS, CALS, and those who have been affected by MND'S. Be respectful of our opinions, and that this is a place that we have to connect, and be heard, understood, and make friends.

 

[Alyoop]

Have been away for a few days, I was wondering how your pregnancy was going? You must be due soon, which is very very exciting. I really hope you post a picture of your little cutie? Best of luck with the birth, and sorry you have been feeling unwell.
Aly

 

[naynaydevil]

Have been away for a few days, I was wondering how your pregnancy was going? You must be due soon, which is very very exciting. I really hope you post a picture of your little cutie? Best of luck with the birth, and sorry you have been feeling unwell.
Aly

thanks alyoop... baby is coming soon, c section next monday. i will of course put a picture up of her, hopefully it will make everyone smile a little :-D

im back because i am worried about bulbar issues. i went back to my neuro on jan 13, the day after my hoarsness, coughing, excess phlegm started, and she wasnt concernd as usual. she is also a neuro that specializes in neuromuscular disorders, so i should trust her word.
i also have swallowing issues---- where it takes me 3-4 attempts to get food/drink down ..but i REALLY REALLY think thats from my anxiety.

 

[Alyoop]

Wow next Monday. That's soooo soon. Hope your c section goes well. Sorry you are still having anxiety issues, but it's great that your neurologist thinks everything is going along Ok. Will be thinking of you.
Aly

Ps yes you will make us all smile more than just a little.