Awidz' thread- advice needed

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Awidz

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Joined
Jan 20, 2018
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Country
Uni
State
Arkansas
City
Fayetteville
how do I do a new post? for asking questions. I keep trying but it keeps getting deleted, and now saying they will ban my privileges. I don't see what I am doing wrong with posting or how to start new post. p kease help, I must be missing something.
 
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looking for help. been having twitching in body for over 1 3/4 years. most recently past 4 months to have shortness of breath and swallowing problems (not with foid or drink) just saliva during the day. out of all docs here, they sent me to mayo in Feb to be seen, but this was before breathing and swallowing issues. ran into doc that did not care did 1 test (nerve conduction study) which I had already had done and sent me home, huge waste of 3k it cost me to get there. came back home to docs astounded that they did nothing.
I have had 2 emg/ nerve conduction test (both clean), 2 brain MRI and 1 lower thoracic mri all found nothing. my question is can it be als or bulbar als after almost 2 years? I have no speach problems or atrophy noted. I am out if docs here and nowhere to turn and out if $ here to chase this anymore, and getting worse. any help would be appreciated.. thanks much
 
Hello Awidz. With symptoms for 2 years and a clean EMG, I’d recommend you not waste any more of your $ chasing after ALS. If you had ALS, something would have shown up on your EMG, and you’d also likely have significant disability by now.

Keep working with your primary care physician to get to the root of your current issues. Hopefully it will turn out to be nothing serious or at least something treatable.

Best of luck,
 
thanks Karen, not sure how to change header on this so other can comment. kinda lost on how this forum works, it's difficult to navigate. I hope some thing would have shown up by now, but lost on worsening and more and more symptoms with no help
 
No worries. People will see your thread here and can comment if they choose. Just keep checking in here periodically to see comments. We just ask you to keep all your postings to this thread.
 
thanks much for thread update , sorry for confusion
 
Awidz, after reviewing everything you've written over many months, you have never once described any symptom of ALS, and over many months you have ignored us just as you ignored the neurologists who examined you.


See your primary.
 
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so I see you are one of those people. someone who thinks they can say anything to anyone online, even if looking for help. fyi get your facts straight. have not posted on here for 10 months. so would like to know how you have been reading all my post in past month when there has not been any. I am looking for help, not blatant arrogance and criticism. last post was before i went to mayo in february , and then did not have breathing or swallowing issues. and Pcp only refers me to specialists not his area, been there done that.
Thanks for reply but if all you are going to do is criticize with false information, keep it to yourself...thanks
 
Awidz, several medical doctors have examined you and run two EMG tests. Here, your posts have been seriously considered by half a dozen of the world's most qualified people (each of whom combines formal medical training with personal ALS experience). All have concluded you don't have ALS.

Yet you insult every one of them/us by continuing to second guess. This does not help YOU. Quit wasting your time and money and worry.

The people on this website are very, very supportive to folks who are dealing with ALS. We also help some folks who are concerned about having ALS. Then there are a few people who refuse to take 'no ALS' for an answer. Let me tell you why that's a problem.

During their limited life remaining, People with ALS sometimes are generous to give support to others. But they have limited energy, limited time awake, limited months remaining before their bodies give out completely. Some of our people are reading posts by using expensive equipment, and they post replies laboriously, a letter or a word at a time, by moving their eyes across a screen and blinking. It's difficult, exhausting work that deserves respect.

We'd like to focus our attention on ALS, where we have some expertise. So once a questioner such as yourself has been provided the best answer an Internet forum can provide, any further question/answer is a waste of precious time and energy. We could be helping someone who needs help with ALS.

My criticism is blunt and reserved for those who refuse to listen to the nicer folks here. You think you're being reasonable, but you're assuming your time is more important than that of the terminally ill. You're assuming it's OK to second guess a half-dozen medical doctors. (Get a second opinion, sure. But don't pretend to second guess them.)

Our members have told you several times that we do not have expertise in whatever it is that you need. You didn't listen. I am here to get your attention.

Look for help. In the appropriate place. Not ALS. Good luck.
 
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Bless your heart Awidz
 
Awidz, as you wrote an unwarranted snide remark to Atsugi is really an
address to all the very knowledgeable members who have told you
DO NOT have ALS...

"keep it to yourself...thanks."

No... the time has come for you "to keep it to yourself" and move on.

I hope some doctor will find what's wrong with you... if he starts first
from the head down.

For your own good the time has come...

Marie, his heart doesn't blessing... it needs a change.
 
Mod note- closing this thread.

Awidz, this forum is not the place for you. Not sure what your health issue is, but it is not ALS. No more posting please.
 
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