how do you deal w time? w symtoms? wo going insane?

[trfogey]

munecagirl22,

Before you continue to make an absolute moron of yourself in this thread with your silly stories about what you've read about ALS on the Internet, be warned that wright is a professor at a medical school and he trains doctors-to-be how to perform and how to interpret tests like EMGs and NCVs. If wright tells you that you don't have any idea what you are talking about, you would be well-served to shut up and listen, instead of running your mouth without having your brains or your common sense engaged.

And, by the way, you don't understand what you're reading in that thread you keep trying to link either. The person that claims to have been diagnosed with ALS and a normal EMG (user ID was beckycooper31, wright and all other interested parties) also stated (in other posts she made here) that she had

• an ataxic gait
• weakness in her legs
• clonus in her right foot
• 5+ reflexes
• a weak grip in her left hand
• fasciculations and twitching
• "so many other symptoms with progression"

all of which were confirmed by more than one neurologist. Unlike your case, where next to nothing has been confirmed by any neurologist and you've been told that every test was normal.

You've long ago used up any sympathy you were entitled to here, so it's time for you to move along and find some other bulletin board to post your nonsense on. Good luck to you.

PS to board administration: munecagirl22's links keep breaking because of that ridiculous string substitution macro you run on each post that changes d+x to "ALS diagnosis". Just thought you might want to know that your Frankenstein has escaped the lab and is doing the unexpected, instead of the merely ridiculous.

 

[olly]

bravo bravo bravo
congratulations to everyone who managed to read all the dribble in this thread..........especially those who replied.

special mention goes to MR T for this quote................"If wright tells you that you don't have any idea what you are talking about, you would be well-served to shut up and listen, instead of running your mouth without having your brains or your common sense engaged."........priceless!

and to our special guest and resident expert MR Wright..........good to have you drop by,we have missed you.

munecagirl22
go get a life!
people here are severely disabled with als and you are wasting there precious time and energy.
you do not have als
you need to put things into perspective,your tests are fine ,you can still walk and move,eat,speak and breathe..............you have a home,money,enough to eat.
hey,lifes just hunky dory for you.(compared to tens of millions of others)
i am sick to my eye teeth of all this moaning!

 

[olly]

News allert.

 

[munecagirl22]

ok well everyone has there has there own feelings, which is fine call me a troll if that makes you feel better.

but thats what i ment that she o people have ALL those symtoms of umn lmn and yet still have ALS.. not that i had als , i was showing that it does happen people with way more sytoms then i and normal emgs and still happen how am i scaring people ?

iam sure they can just as easily look up or do look up post and read the same exact stuff.. and they will get the same thougut as i do.

 

[notme]

My point was not to say that your balance and falling issues are nothing. The point is that they ARE something--just not something that sounds like ALS ---and you're so concerned with ALS that you're not seeing the right type of doctors--(if a neuro told you those things--you need a NEW neuro)

No, I don't think you're imagining the balance issues--find a NEW NEURO if you feel you need checked -- not one that tells you things that you're able yourself to read reputable sites and know aren't true.

Take charge of your health. You've discounted every suggestion I've made-and you're welcome to discount them--but I've worked in the medical field for most of my adult life--and I started having multiple health issues in my early 20's.

You have basic issues that need addressed. Your blood values. Your balance. (which could still be orthostatic hypotension) If you go to these neuros with a fixation on ALS-they are going to blow you off as a nut case.

 

[munecagirl22]

My point was not to say that your balance and falling issues are nothing. The point is that they ARE something--just not something that sounds like ALS ---and you're so concerned with ALS that you're not seeing the right type of doctors--(if a neuro told you those things--you need a NEW neuro)

No, I don't think you're imagining the balance issues--find a NEW NEURO if you feel you need checked -- not one that tells you things that you're able yourself to read reputable sites and know aren't true.

Take charge of your health. You've discounted every suggestion I've made-and you're welcome to discount them--but I've worked in the medical field for most of my adult life--and I started having multiple health issues in my early 20's.

You have basic issues that need addressed. Your blood values. Your balance. (which could still be orthostatic hypotension) If you go to these neuros with a fixation on ALS-they are going to blow you off as a nut case.

NOTME

your right and iam not saying that iam discounting anything you say, if ANYTHING iam still here because i feel you know what your talking about , believe it or not

thats why i went back to my gp and went to the ENT speicalist, and did whole sorta studies or testing i shall say.

i never had blood pressue issues. but hey a tilt test for spike in pressue who knows thats always a possibility. This neuro is "supposedly" one of the best and i reallly need to trust here iam scared to keep shoping paying all out of pocket and getting someone who is worst

yah your right going to a neuro and mentioning als, they will think your a nutcase ,but i guess she doesnt relieze ive gotton told that. by a neuro..

she isnt thinking my balance issues and whatever are a big deal blowing them off right now as :maybe" chemical imbalances tho blood work comes back ok.. well time will tell

iam going to just get the skin test done, go to liver dr, and within 6more months or a yr.. wait too see what happens.. if something else major happens ill go back.. and either go to the als clinic at duke or some neuro at duke.. as my gp suggestd

 

[Tako]

Just because a neuro is considered "One of the best" doesn't mean he/she has ever seen ALS. Your best bet is to find a neuro in his/her 40+ years of age, at that point they have seen lots of different cases. Your mistake was ASKING ABOUT ALS. NEVER ask a doc about illnesses or use medical terms like atrophy or gait, because they will know you have been on Google and wont take you seriously, and don't mention it even if another doc mentioned it, let them find the problem on their own. If your doc asks you if you looked stuff up, lie and say no.

I do hope someone makes a sticky about how to see your doc and what not to ask.

 

[munecagirl22]

got a call from neuro today said that she redid my ammonia labs and they were perfectly fine and my problems (like she was she of i could tell in her face and the way she talkd) is offically not from high ammonia levels, she said sometimes blood work comes back high when in reality checkd again its actualy normal

so RIGHT when i was feeling better (mentally) telling meself it was ammonia levels causing this.. soooo.. after a skin biop there just isnt much esle to do , besides me wait for more issues,, or maybe go to DUKE in another 6-months.. grrr puts a damper in my dAY!


TAKO, you are so right, but its hard to get referrals wait so long, and you hear there good, you just dont know what to believe i mean i never knew people getting sick and how many true idiots non caring drs are out there.. scarey...after this skin test iam thinking my next stop is duke... then .. if nothing there and i have worsting syntoms maybe mayo?...

 

[ruthiep]

Can't this thread be closed?