Emg Question

[boxer22]

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

[paula B]

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

[Jamiet]

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.

[ltr]

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

[duplinwino]

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...

[boxer22]

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

[Jamiet]

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

[Jamiet]

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

[vmd]

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.

[boxer22]

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

[Jamiet]

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.

[vmd]

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.

[Jamiet]

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

[Jamiet]

Maybe we can create an "Almost ALS forum"....for us inbetweeners.

[vmd]

Yes, some of us may be in the "in between stage" for years before we have any resolution.

[cstans]

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

My husband began getting twitches in his upper body last summer. We had no idea what was going on. He went to his his Doc in September and was referred to a Neuroligist in October. Before we could get back to see the Neuro to get test results of a MRI my husband had a heart attack. We were told in the hospital that they suspected my huband had ALS and that was the middle of October 06. His symptons were twiching in his arms, slight slurred speech at times and weekness in this hands. He had a EMG at the end of that month and no diagnosis then of ALS. He had another in March 07 and finally got the Diagnosis. I think that the disease doesn't progress quickly enough in the early stages to let the doctors give the diagnois even though they suspect ALS. I do know the EMG's that my husband had lasted over an hour each so I would be suspect about a 5 minute test. My husband has progessed rapidly in my view just since we got the diagnosis less than 3 months ago. I don't see any slow down and wonder if he will be able to go on a cruise that we have scheduled the end of July. It's hard to live with the disease not knowing what to expect and what he can and can't do in the near future. I don't think the diagnois of this disease happens very quickly which just increases our anxietly level knowing the severity of this horrid disease. Be patient if you can and pray.

[CindyM]

Hi cstans, welcome to the forum. I'm no expert but in my heart of hearts I want you and Hubby to take that cruise. If he needs courage, read some of Quadbliss's posts about traveling with wheelchairs, pipab machine, and the whole 9 yards. If by some miracle he gets better (let's pray that he does) you guys can celebrate with another trip next year. But there is no time like the present! regards, Cindy

[Jamiet]

cstans,

go on that cruise if you can. time is precious, good times, although hard to see now, will be life long memories.

I'm sorry for what's happened to you and your hubby. I'm 32 and a whole slough of issues and go to the als clinic on mondy, probably to be told its als or probable als. i've got young kids, as a matter of fact, my little girl in the avatar picture just made one year last saturday. i'm hopoing daddy get's to walk her down the isle.

enjoy your time, it sounds as if you are soul mates.

please come back, stay with us, we appreciate the support and give the same in return.

regards,

jamie

[Jamiet]

i duplicated the answer, see above, can't delete this post now

[Lorie]

Don't forget, my Brother had symptoms for seven years before suspecting ALS. Suspected three years ago, Dia. two years ago. Total of 10. He is not doing very well today. My heart aches for him.

No Doctor can dia. until the symptoms get intense enough.


I would not stop at the first doctor, been there and done that!!! Still doing it, myself!!


Lorie

[vmd]

Lorie:

Sorry to hear abut your brother. Fortunately, for him he has a very caring sister.

What types of symptoms did he have 7 and 3 years ago? When I think back, I probably have had some form of neurological symptoms for years as well, perhaps 3 to 5 years.

This is why the diagnosis of ALS is so frustrating. We have to wait until the symptoms become apparent and that means many years of worry. Of course, I would think that the majority of those with ALS can be diagnosed relatively quickly.

Does anybody here, both the PALS and those waiting for a diagnosis, think it would be a good idea to conduct a poll or survey to identify the variety of symptoms, when they occurred, how long they have had them, etc.? Perhaps, this has been done already. Such a poll would give us a good picture of the variation in presenting symptoms, types of symptoms, and timelines.

I could probably develop a list of symptoms from an ALS site and then we could just check off the symptoms.

[Lorie]

My Brother hade Muscle Cramps and Twitching (faciculations) for the first 7 years. The Docs. had no answers. They put him on Quinnine and Muscle relaxants. He did not have any muscle weakness. He stared having weakness in his arms in 2004. They did the EMG and NCV test and suspected ALS. It wasn't until he stared having atrophy in his arms when they were able to Dia. He has no use of his arms or hands, his neck is getting weaker. Now he says that his legs are getting weaker.

VMD (don't know your name)
Timothy has gone through a lot. We moved him from WV to AL in Jan. He had to leave his wife that has CP. She has her parents there. He was so happy there. But, the main thing is. He wasn't getting the care he needed. His Doc. called me himself and told me that either Timothy come to AL. Or he would be put in a state facility. That horrified me. I was just waiting and planning on the phone call from Timothy and His wife, for Timothy to come home to AL. The call came. I grieved for two years while he was there. But I could not demand him to come home.(although thats what I wanted). I didn't want him to blame me later. People who are already around their families that are willing to help are very lucky. Timothy basically had to give up his life. But, under the circumstances. He knows that he is better off. I make sure he has everthing he needs.

I hope your situation comes out different. Please keep me updated. I care about everybody!!! I am selfless (not selfish). Keep tuned on the General Discussion About ALS Thread. More to come. I am posting about my self.

Need anymore info. just ask. I am full of it.
Lorie