Good news & bad news... what a pair!

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Jeff Long

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Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
City
Raleigh
So the Duke ALS Clinic called and said they were moving my initial appointment with them up by two weeks; great news!
Then they said they wanted to start with another EMG and nerve conduction study; not so great news! Dang!
I'd rather have my pancreas rubbed with a file than have them do either of those things again, especially when the EMG folks do the tongue portion of their test. Some fun there!

So Dumb Question (DQ) #485... did others here have these procedures repeated at the ALS Clinic, or did I win another 1-in-50,000 lottery?
This will be the third time in 4 months, but no matter how much I hate these things, I'll "shut up and color" and do what the doctors say.
 
It actually happens quite frequently -- that the ALS clinic will repeat the EMG. Didn't happen to me at Duke, though, because the private neuro that did my EMG was a former professor at the Duke Medical School and had been sort of a mentor to Dr. Bedlack along the way.

Good luck. Maybe you'll get some more good news.
 
Man I feel for you. Where I come from we say we'd rather have our butt rubed with a brick! Sorry its not funny, try and stay positive if they are rechecking maybe something in the first tests didnt look right and there is a chance you don't have IT
 
Man I feel for you. Where I come from we say we'd rather have our butt rubed with a brick! Sorry its not funny, try and stay positive if they are rechecking maybe something in the first tests didnt look right and there is a chance you don't have IT

Well that'd be a kick in the pants! After the 1st EMG the neuro said "I don't know what it is, but it's not ALS. Go home and come back in 6 months."
My GP ordered a second EMG (I gotta "slap the stew outta" that guy!) from a more experienced neuro. During the initial exam he was pretty confident the EMG would be dirty and, after gouging my tongue and body for 2.5 hours, he was right. I hate when that happens.
Hey, can't I keep going back until I get a result I like, and make that my reality!?
 
I had four in all Jeff. The first guy said carpel tunnel. The next 3 said ALS. I had the last 3 because 1st and 2nd opinions needed for such a serious diagnosis and the 3rd because I had a new Neurologist and he wanted his guy to do it. It sux but just do it and get it over with. If I could choose which one to keep it would be the carpel tunnel. Sorry Jeff!
 
Jeff, I so can relate to what you are going thru. I have had them done 4 times in a 4 or so months. I have to say I have experienced other test in my life that were alot worse but by no means where they fun! But on the chance it will show good results will be all worth it. Hope for the best! Hugs
 
If you already have a diagnosis I dont see why you have to go thru this again....I never had my tongue done, thank God! Stay brave! I had EMg 3 times until they gave me a firm diagnosis.
 
I had 2, the first guy said probable ALS but he saw carpal issues. He said come back in 6 months. I didn't like him or his office at all.
Second one was at the ALS clinic and they gave me a firm diagnosis in about an hour. So fast it made my head swim.
 
Sorry Jeff.
I really think nobody trusts the other guys equipment or ability to read the damn things.
My local Neuro did one in Jan and I thought the nerve conduction was worse than the needles, then waited for muscle biopsies and other reports to come in.
then had # 2 at Mayo in Jacksonville in May for 2nd opinion and decided I really didn't like either part,
then #3 at MCG, Augusta, ( I think I told the Neuro he couldn't possibly be serious) His reply was that if he was going to treat me he had to be sure.
#3 was a doozey! Had a Fellow at the end of her rotation do the tongue for the first time.
I was mortified when she asked me to wiggle my tongue back and forth while it was skewered with my chin like a shish kebob
My clinic knows I'm eager to participate in any little study that comes up, but now I always ask if an EMG is involved!
 
Sorry for your pain. My husband had the initial one with his first neurologist in February and then repeated in April at the Emory ALS Clinic. Haven't had to do another one since. They are the worst....
 
An EMG is not like an x - ray where each Dr. can read the results and be confident that what they are seeing is 100% accurate and be comfortable coming to the same conclusion as the person who performed the EMG. EMG's are often only as good as the person conducting them so with a diagnosis as serious as ALS many Neuros will want to perform their own EMG.
 
Thankfully the clinic at Mass General in Boston didnt see any need to re-do my 4-limb EMG from Portland neuro. My first, thinking carpal tunnel, wasn't by a neuro, big mistake. But I must say that after no-drug childbirth, subsequent dentists, shots, blood draws, and EMGs were relatively easy to breathe thru :)
Good luck!
 
I have had three EMGs and nerve conduction tests. I have been needled and electrocuted in places where I did not know I had muscles. :shock:
 
Thankfully the clinic at Mass General in Boston didnt see any need to re-do my 4-limb EMG from Portland neuro. My first, thinking carpal tunnel, wasn't by a neuro, big mistake. But I must say that after no-drug childbirth, subsequent dentists, shots, blood draws, and EMGs were relatively easy to breathe thru :)
Good luck!

Sue,
Should be true, but I am afraid of needles! I mean sweaty palms, panic-mode fear. So you can imagine my surprise when the neuro said he was gonna run one through my tongue! He left one dangling our of my cheek for a couple of minutes until I urged him, for the sake of his family's well-being, to take it out!
I once had a cavity filled without pain meds... when I asked if it would hurt, the dentist dead-panned "You'll be the first to know!" I was. It did. But not having him shove a needle in my mouth made it worthwhile!
And hey, I had 4 kids and never even got offered any drugs?!?
Such a sexist world we live in...
 
Jeff,
When I had my emg I didn't think it was that bad but I think I was so scared it took the edge off the pain. The tech told me she had men cry.
I feel for you, it's not fun.
Try having a baby without an epidural, now that was fun! :)
Good luck my friend, I'll be thinking of you.
 
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