I'm back!

[jjgevf]

Well,I tired to forget about the whole ALS thing,but it just won't go away.As some of you know from my post about 5 months ago,I started noticing I coudn't swallow back in Oct. of 2010,it was as if I forgot how.It stil happens like before,sometimes it's bad and then other times it's not a problem.It kind of comes and goes.Then I noticed the twitches,their in different places.Well now I'm having cramps in my palm of the left hand.It seems ike aot to ignore,but at the same time,I don't know if I'm leaning toward ALS because I've read so much about it and know the syptomns.Does this seem typical of ALS,it's been almost a year from the time I frist started having the swallowing problems,no weakness in any muscles as far as I can tell and I think I would know even if it was sight?Please need some guidence here,it's all very heavy on my mind with three kids at home!I'm 35 now too,don't know if that makes a difference or not.

 

[Alyoop]

No doubt you have seen a doctor and had swallow tests by now? What did they show and what did your doctor suggest you do next?

 

[Ms. Pie]

Yes, what have your doctors said about any tests you've had done?

 

[trfogey]

No doubt you have seen a doctor and had swallow tests by now? What did they show and what did your doctor suggest you do next?

I'll bet she's done none of the above. She hasn't been scared badly enough by real choking; otherwise, she'd be coming back with answers and not questions.

Twitches without weakness are meaningless, jjgevf. Just like the occasional morsel of food or drink that goes down the wrong way. Everyone has them.

Bulbar ALS symptoms don't come and go -- they come, stay, and get worse to the point that you choke on your own saliva. Not to mention your tongue becoming paralyzed and rendering your speech completely incomprehensible.

And people who seek medical advice from the ’Net instead of going to a real doctor and getting real answers are providing a horrible example to their children.

 

[jjgevf]

No I haven't seen a doctor about it,because everyone keeps teing me it's normal and everyone has that feeing of not being abe to swallow.I was told that the reason it keeps happening to me is because now I'm aware of it and the mind is a powerfu thing ect........I have had an MRI done awhile back,though I didn't mention the swallowing thing to my doctor.It's ike my body or brain forgets how to swallow,like I can't make it happen,and not al the time.I have read of people on this forum with bublar ALS that the swallowing comes and goes trfogey.And it don't go down the wrong way,it won't work!Testing cost money and not everyone is insured.I keep reading and convincing myself it's in my head and thats way it keeps happening,even though I think I put it out of my mind after it doesn't happen everytime I eat!As far as my kids go,I don't let them see or know whats going on inside of me.I came here for some support and hopefully answers to some of my questions,not a diagnose.

 

[trfogey]

We are giving you answers to your questions and the kind of support you need, which is a kick in the butt to get you to see a doctor about your problem. Your symptoms don't sound anything like ALS or other MNDs, so pushing you to your doctor's office is the only sane advice we can give you. Who knows, what you have might be treatable if you would get off your fundament and get it checked out.

If all you want is sympathy, you've definitely come to the wrong place. Sort of like asking an amputee to have sympathy for you because you have a hangnail, if you catch my drift.

Go to your doctor and get checked out. Stop reading about rare diseases on the ’Net because you lack the ability to objectively evaluate your own condition. Consider getting some advice on how to cope with stress and the health anxiety it is clear that you have. Hanging around places like this will only make you feel worse, not better, so move on to a different online community if you want to feel better (perhaps the one at a b o u t B F S dot c o m if your twitching really bothers you).

Good luck to you.

 

[llwlpn]

This is why I didn't post here until I had an ALS diagnosis. It is very frustrating as someone with this horrible disease, when a person has a few symptoms that don't really point to ALS comes here and is convinced that they have ALS. Having medical knowledge can help but it can also hinder getting proper treatment. I'm a retired nurse and I've seen plenty of doctors and nurses panic over common ailments because they're convinced that they have cancer when it's a simple cold.

If you're concerned that you have ALS then you need to see a doctor. People on the internet can give you their opinion but only a doctor can determine if you have ALS or another neurological problem.

As it has been pointed out to you before, ALS does not come and go. It comes and stays. Also if you've had symptoms for almost a year then most likely it would have started to spread by now. Also, I didn't start twitching until about 6 months after I started noticing that my hand was weak and clumsy.

Good luck in finding the cause of your problem.

 

[ruthiep]

I have to agree with the earlier posts, especially Trofegy. You won't find a more compasionate or sympathic group of people than those on this forum---however, the needs you seek to be "fulfilled" by coming here have to be warranted. You posted 5+ months ago complaining of various symptoms, however, you've made absolutely no effort whatsoever to follow up with a licensed physician who can address you medical needs! Everyone here can sympathize with money issues and insurance.....but we all have to suck it up, bite the bullet and see a doctor if a real need arises. It's sad that you are having these health issues (and I'm certainly not trying to discount them), however, it seems pretty lame when you chose to get on this forum and ask questions and seek "SUPPORT" from people who either have this dreaded disease or have a loved one suffering from it when you yourself are to darn lazy to take a proactive step and go to the doctor to address your issues. I have to ask....what the crud are you looking for?

 

[brooksea]

I have to ask....what the crud are you looking for?

That nails it, Ruthie!

What do you want? The only way you can find out is by going to the doc. Period.

 

[jjgevf]

Wow,is all I can say!If I was to be diagnosed,this would not be where I came back to,I get some of you,but most I do not.My mother has progressive MS,and would never act like this to anyone that was just plain scared.I will be seeing a doctor about this,it's not lazy,just fear of the unknown and what may be discovered.I'm not saying this is what I have,just that from what you read on the internet,alot of what I have points to here.I know the internet has alot of misinformation,but who hasn't looked up their symptoms at some point on the internet,proabely most on here,which leads to the fear when you have stuff going on in your body that you've never had before!I know how horribile of a disease ALS is,i'm not making light of ones that are dealing with this or watching a family member deal with this.We should all try to be kind,I'm sorry I found no kindness here.It is sad,like saying this is why you didn't post before you were diagnosed,which don't you deserve support in every stage,even before hearing the dreaded news,and when alot of people on here said it took them up to a year or two to get diagnosed?Sorry you were all so offended,I hope all is well with me and hope that if someone eles comes here like I did and it turns out they did have it after all,you didn't treat them as you did me,God bless and good luck to you all,I only wish for the best for you and you loved ones!

 

[Alyoop]

Really, I read the despises and read a whole heap of concern and kindness. There is concern that you have distressing symptoms, that have been going on for several months and you have chosen not to get them investigated.
I am not sure how you have interpreted that as uncaring.

If you are anxious still, after 5 + months, then you need to be brave and despite your fear of the unknown, just do it. We have all been in your position and had to go through the painful tests and endless waiting for results. It's unpleasant but necessary if you are truely worried.

Don't look to ALS for the answer, you are not in a position to even contemplate such a horrid disease. You need to take a step back. Reread the posts again, but try and think positively and you will read so much more in the responses.

Off to the doctor you go

 

[trfogey]

A few comments.

I will be seeing a doctor about this,it's not lazy,just fear of the unknown and what may be discovered.

That excuse went past its expiration date five months ago, and it was a lousy excuse then. Now, it's just a waving middle finger to everyone who answered you then or now.

I'm not saying this is what I have,just that from what you read on the internet,alot of what I have points to here.

None of what you have points you here, and your lack of progression simply seals the verdict. You would be a very sick woman if you had been dealing with bulbar ALS for nearly a year. You wouldn't be able to hide it from anyone. People would be insisting that you get off the Internet and get to a doctor.

I know the internet has alot of misinformation,but who hasn't looked up their symptoms at some point on the internet,proabely most on here,which leads to the fear when you have stuff going on in your body that you've never had before!

People who are genuinely as frightened about their health as you claim to be don't sit around for five months twiddling their thumbs. They go to their doctors and get answers.

I know how horribile of a disease ALS is,i'm not making light of ones that are dealing with this or watching a family member deal with this.

Yes, you are. You're just too egocentric and perceptionally-challenged to see it.

We should all try to be kind,I'm sorry I found no kindness here.

You found no sympathy for your "poor pitiful me" act here. You got plenty of sound practical advice that you ignored and blew off like it was so much dust on your hand. That wasn't particularly kind of you, was it, especially when all you have to offer for excuses for ignoring that advice is "I'll get around to it, but feel sorry for me until I get around to it."

You got what you gave. You want something different, then give something different.

 

[davegud]

Titling this thread "I'm back!" was like painting a giant target on your forehead... People who question their neurologist get slammed on here all the time, so what did you expect when you haven't even seen a doctor? I'm sorry that you have undiagnosed medical problems, I recommend seeing a doctor. Good luck!

 

[Alyoop]

Sorry my spell check put in despises instead of posts. I am a lazy proofreader.

 

[olly]

jjgevf.............GLOBUS,this is a very common anxiety issue were people feel they can not swallow.
the difference being FEEL LIKE.
my uncle was diagnosed with globus after they reasured him with tests that there was nothing wrong.
if it feels like your swallowing dont work then i presume during these episodes you can not swallow any food at all.........feels like a lump in your throat? GLOBUS
now, having REAL swallowing problems i dont just feel like i can't or feel like something is stuck............food is actually stuck there and thankfully more ofton than not i have to try and dislodge it some way, otherwise i choke if it happens further down.
its not a case of can't swallow at all but a faulty swallowing.

if your not wanting to pay for tests to get it checked out then you can't think its that serious........can you?
so how do you expect us to take you seriously.