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boxer22

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Learn about ALS
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nc
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raleigh
Hi agian everyone,
I was very happy when i heard that my emg was clean, but a few people in here have said that they have had clean emgs so i am a little worried agin. My emg only lasted about 5 minutes and it was only a couple of muscles on my right side. What are the chances that they have missed something 4 months into twiching? Should i seek another opiton? I have A ALS clinic about 10 minutes away from me at duke, should i go? Advice would be great. Thanks
Ashley
 
A second opinion is always good.Do whatever ya need to do to make you feel at ease.
Good Luck and keep in touch.

PaulaB
 
How many times did they stick you in the needle and in what muscles?

Yes, i would go for a 2nd opinion at the ALS clinic.
 
Ashley - Go, go, go! You are lucky to have a clinic so close and you can't get a better diagnosis. You need that to get on with your life or to make any future plans. Call them and get another opinion. When I went for my first visit to the neuromuscular clinic, they redid everything because they want their "own" tests. Good luck. Leslie
 
Ashley, I didn't realize you were so close to Duke (I'm around UNC). Who did your EMG? When my husband came here to have his done it took almost 4 hours between the EMG and the nerve conduction study...
 
I dont remember how many times he stuck me with the needle, it only felt like 5 or 6 times no kidding. It took all about 5 MINTES, i thought that is was really quick for a test. The nerve test i had done right before the emg was longer, it was about 20 minutes. He never explained the results to me either. Just said i had nothing like als and i should get that out of my head. But i have a appointment on the 20th with my neurologist who will go over those results with me along with my cpk results. I got my emg done at raleigh neurology, thats where i go. But we have an ALS clinic real close in durham, its duke als clinic and it says on there website that i dont even have to have a referral. I really wish that they would have done the emg longer. If i go to the clinic do they start more testing the first day? I think i will make an appointment there. Thanks guys! Oh i think he stuck my right foot with a needle, 2 sticks in right calf, 1 stick in theigh, and a couple in my back. Not really sure if that was enough to get a good reading.
Ashley
 
It sounds as if, they stuck the correct muscles, esp. your paraspinals (back). If you had ALS, they would have seen some type of activity. Something whould have shown up.

If you still feel you want a better opinion, then, yes, i would schedule a visit at the ALS clinic, but would wait about a month or two, so sched it now. Tehy will more than likely do their own EMG, but they prob. will not do another one if you've just had one.

Call and sched. your appt., go see the specalist for reasurrance.

rgds,

jamie
 
I've had 3 EMG's, the first was completely clean. The second, although they said it was WNL (within normal limits), my left quad had "ticking" and the EMG guy was concerned, but the neuro wasn't.

The 3 EMG showed alot of activity, but no denervation. It showed F Wave afterdischarges...?

I will likely have one next week.

rgds,

Jamie
 
Considering the fact my neuro did not do any emg test on my back, next time I have an emg I will go to an als specialist.
 
Jamiet said:
I've had 3 EMG's, the first was completely clean. The second, although they said it was WNL (within normal limits), my left quad had "ticking" and the EMG guy was concerned, but the neuro wasn't.

The 3 EMG showed alot of activity, but no denervation. It showed F Wave afterdischarges...?

I will likely have one next week.

rgds,

Jamie

Hi jamie,
Does those 3 emg's rule als out since there were no denervation? I have no idea if mine came back with ticking or alot of activity or something else, he just said to put als out of my mind but never went over the results with me in detail, i guess he will send the results to my neorlogist and he will discuss them with me. Does your doctor suspect a kind of disorder for you are does he think you are fine or are you kind of on a wait and see thing? The wait and see thing is scary to me. I just really wish there was 100% golden test to rule als out or in.
Ashley
 
Ashley,

I don't know. ALS is very very different in every person. I've talked to one guy, it took 3 years to diag and others who had 5 EMG's. I can with 100% certainty tell you that you can have a normal EMG and still have ALS, but, in a reasonable amount of time, something will show.

My neuro who is an ALS spec., see it all day long and told me with 100% certainty its NOT ALS. Grrreeeaaat....but what the heck is up with me. I'm sure you've read my post. I beg to differ with her, but i hope she's right. I've got about 15 of 20 ALS symptoms, reflexes and tongue being the most concernin on top of "shrinking" muscles.

She did say, there was something wrong at my last visit, i guess becasue when she tapped my left knee, i literally kicked her and are 100% she had a pretty bad shin bruise the next day.

SHe told me that neurological problems take time to show their face.
 
Jamie:

Those of us who have ALS symptoms go through all these tests, have clean emgs and may be told by the neuros that ALS is not a possibility. However, you also state that ALS patients can have up to 5 clean emgs and eventually be diagnosed with ALS. Then, there are the variations in emg testing and interpretations. Some experts suggest that emgs on the paraspinals be performed, while the recommendation by other experts is to do at least 4 limbs, but not necessarily the paraspinals, etc.


So why do we continue to have these tests when they seem to have limited diagnostic significance? As you state, neurological problems take time to develop, Meanwhile, we put our life on hold or we decide not to make future plans because of the possibility of ALS. Not only is this disease a tremendous trial, but the diagnostic process itself is a great trial. No wonder I am quite depressed these days.
 
Yep, you hit the nail on the head. EMG's, if performed by the right person, are a very good tool, but if not performed correctly are only a pain in your rear and give useless results.

My first one was inadequate.

Wellbutrin helped me get on with my life. OH yeh and it comes with a side effect...one good one..increased libido.......my wife is not complaining
 
Maybe we can create an "Almost ALS forum"....for us inbetweeners.
 
Yes, some of us may be in the "in between stage" for years before we have any resolution.
 
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