Status
Not open for further replies.

christrejo

New member
Joined
Oct 25, 2014
Messages
4
Reason
Learn about ALS
Diagnosis
08/2014
Country
la
State
ca
City
east los angeles
Hi sorry to all that suffer from the disease i just have some concerns i would like to share and get your opinion on then ill leqve and i did read the stickies but unfortunately the stickies dont write back so please just a moment of your time alsforum and ill be gone k , i have been dealing with this scare of als for 2 months it started in my legs with weakness and sorness and ocasional pain feet stiff in the mornings often legs have a vibrating feeling inside them all over twitching that is real quick and tounge twitches while at rest and shakes when i stick it out and when i have my mouth open my lips and cheeks shake* and tounge* looks like its getting smaller scalloped edges a lil bit also i do all the tests i can still tent my cheeks move my tounge side to side fast put my tounge to sides of cheeks and resist force when i ask someone to push my tounge thru cheeks , wake up deeling weak and tired all the time went thru a stage where food was constantly gettin stuck but that subsided i dont slurr but i feel like i do like words are harde to say sometimes and when talking sometimes i feel like i have to catch my breathe more si have been to 2 neuroologists first one didint satisfy me so i got a second opinion no babinski no hyperflexia no hoffmans past all tests they both performed and both said i didint have als and im strong no weakness could walk on heels and tippyttoes should i belive them cause i belive i have bulbar als but both of them didint check my mouth area they just said u dont have it i have a emg scheduled nov 11 but they said i dont need to take the test im just so worried my tounge twitches it loos like its getting smaller im scared everyday that im gona slurr like im drunk or choke on liquids so does bulbar als startbin legs and move to mouth idk any advice please
 
>unfortunately the stickies dont write back

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
2 neurologists said you don't have ALS. What are you hoping for?
 
Chris, I read and considered every symptom you wrote.
You don't have ALS.
Even your tongue doesn't have ALS.
Believe your doctors.
 
Hi atsugi and dusty i see u give the most promosing adivice so this is for u just couple more questions and i will leave this site alone , i strongly belive i have bulbar als but both nuero doctors say i dont have any sort of als but they did not check my mouth or do the tests for weakness in that region ,also my symptoms started in my legs can bulbar start this way? And could 2 nueros be wrong is that possible ? Symptoms-stiff feet tounge twitches jaw soreness like its offline lip quivering back pain calv soreness and every so often twitches ,
 
> u just couple more questions and i will leave this site

get you gone or the curse will be upon you!
 
Max on your profile it says extremley helpfull member i dont feel that from you , i promise i will leave once atsugi and dusty reply , u could even bann me or something im not her
 
>Max on your profile it says extremley helpfull member i dont feel that from you

hmmm probably true, one of my dying days :)


Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum. Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered.

You asked, we answered, so please move on.

If you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practitioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 
Max is being helpful by reinforcing what you need to do to help yourself. He tells the truth.

You don't have any sort of ALS, just as the neurological specialists have said. And bulbar cannot, by definition, start in the legs. Bulbar is named for the tongue, where it starts.

Again, twitches can mean anything, or nothing at all. They are not diagnostic of ALS. You do, however, have plenty symptoms of anxiety and stress.

Could two neuros be wrong? Well, of course that's possible. But then, who would be right? You?

Keep your EMG appointment, but don't worry about ALS. If you must discuss this on the Internet, take it to a general health forum or an anxiety forum.
 
Thanks atsugi i hope your right u should be a neurologist well everybody take care im leaving like i promised
 
Banned for multiple accounts
 
Status
Not open for further replies.
Back
Top