To those worried

[jewelchic70]

I have been reading through a loadful of posts. I was worried about ALS for about 6 months now. I wont get into detail but like most of you, I have the classic symptoms of ALS, so at least I thought.

I feel the fear in many of you and have been there myself.

My main purpose to write this is to let you know that today, I had an EMG.
I asked my ALS Dr if the EMG will show ALS. He said Absolutely! I know it has been said here but I thought one more opinion, couldn't hurt.

If you have had an EMG weather it was 5 needles or 55, if it is clean, as per my Dr who specializes in ALS, you can't have ALS. There is no reason to even have another one.

I just wanted to write this, hopes it may relieve some unneeded worry.

Believe The people here, clean EMG really Means No ALS.

Also, a question here may be helpful but in all honesty (nothing against the forum) only a good Dr who knows ALS can fully tell you what is going on.

Good Luck!

 

[sadiemae]

What a refreshing post! Thank you so much. We know we are not doctors, and do our best to give helpful information, but unfortunately so many people seem to WANT this disease. Again THANK YOU! HUGS Lori

 

[Phil M]

Thank you! maybe this should be sticky #148!

 

[limegreenphysicist]

Very refreshing to hear someone who has some logic about them. Way to go girl! And I'm glad your EMG is clean! Hope others will go on and enjoy their lives and stop living in so much fear

 

[AndyDJX]

Is it dumb that it still helps to hear this every now and then? Thanks for this post. My symptoms are not getting any better, worse if anything, but with 3 EMGs under my belt that aren't consistent with ALS, I just have to reassure myself that it's something else (even if I may never know what that 'something' is.)

 

[gillos]

I am seriously worried about how everyone is saying clean emg means no als.

How much percentage does dirty emg (denervation) means you DO have als ?

 

[BarryG]

A clean EMG means no ALS but the reverse is not true, a dirty EMG does not necessarily mean ALS.

 

[trfogey]

I have been reading through a loadful of posts. I was worried about ALS for about 6 months now. I wont get into detail but like most of you, I have the classic symptoms of ALS, so at least I thought.

Just curious -- what are these "classic symptoms" of ALS that "most of you" seem to have? If there is some "list" of classical ALS symptoms out there, it could use a little fine tuning.

 

[dp1969]

Quick follow up query. Can someone define a "clean" EMG? My EMG shows Fibs and positive sharpe waves as well as "Severe sub-acute to chronic partial denervation" in all muscles of my right arm. Does this mean it was a "dirty" EMG?

Thanks,

Dan

 

[easyRider5]

Wait a second, if you have a 'clean' EMG, cant something show say 6m or 1 yrlater? I have had 3 of them, yet my symptoms continue, now they are bulbar-ish...horsey voice, excessive salivation. Are we overstating the results?

 

[jewelchic70]

I dont know how to interpret EMGs so Im sorry I can not comment. All I can go by is that of which my Dr has explained to me which I have shared with you.

My Dr did not give me a report nor tell me what he saw after my EMG. He simply said, "You do not have ALS". When I asked if he would be testing my upper body, he asked me "Would you like more needles"? It was not needed because, as he said, if I had ALS, it would show in my leg muscles. I didn't push for more than he felt was satisfactory. If I dont trust him, who shall I trust?
I have had persistent leg weakness, widespread twitches and cramping in my calf. It has gotten worse but not extensively progressive. He explained to me that ALS is progressive, quickly and that in a few months time, you notice those changes. ALS does not stay the same. Not even for a few months. So for those of you with years of worry, you should put ALS out of your mind. Certainly every few months, you would be getting progressively worse!

Someone asked about repeating the EMG. I dont see any reason to repeat the EMG because I was told if it was ALS, it would have showed.

This is just my case, however and I was trying to share a view from a specialist to possibly alleviate any worries since I've been there.

 

[AndyDJX]

Quick follow up query. Can someone define a "clean" EMG? My EMG shows Fibs and positive sharpe waves as well as "Severe sub-acute to chronic partial denervation" in all muscles of my right arm. Does this mean it was a "dirty" EMG?

Thanks,

Dan

Hi Dan--

I think the clean/dirty terminology is flawed. Clean is pretty straight forward; you get a result that is completely normal. Nothing found, everything is completely dandy. But the usage of the term "clean" I believe has created it's natural counterpart, "dirty." But EMG readings can't be broken down into such definite, black and white terms. There's clean, and then there are the countless variations of abnormalities you can get.

I've had two "clean" EMGs and one EMG that found reduced nerve conduction on my left elbow. It's not 100% clean, but I certainly wouldn't call that a "dirty" EMG either because it's not that bad and it's not something that's normally found with ALS.

These are my impressions, if someone more qualified in terms of EMGs (sorry to put everything on you, Wright!) wants to clarify, that may be helpful...

Andy

 

[PolarBear]

Jewelchic,

I am curious to know what you mean by your "persistent leg weakness" Would you be willing to elaborate. PM me if you like. My EMG was clean.

 

[jewelchic70]

Hi Polar

Im cant PM, not sure how/why? I have had progressive weakness in my leg. Yes, it seems to tire easily but walking, I have inherited a limp. The muscles are not strong enough to maintain my weight. My calf muscle has cramps that come/go. I also have widespread twitches, again, come and go.
The only thing that seems to linger but has not gotten weaker is the leg weakness itself.
Seems you are discribing more of a fatigue. The Dr will note true weakness, despite what you believe to be, it is not the same. My Dr said that my leg is weak but as I said in my post, with the normal EMG and no progression in 6 months, he is not concerned at all! (even though my clinical reveiled clinical weakness) From his information, 6 months would show more progression. Very obvious progression. He said ALS doesnt stay the same, not even for a few months.

I saw an ALS specialist. I would suggest if you are still concerned to see someone who has seen ALS and has read many EMG that are associated with the disease.
You would have weakness observed by your Dr and with a clinical that is "pretty darn good", I would tell you, dont worry. The clinical is what leads the Dr to the EMG. Its not standard to do an EMG without the clinical findings. In my opinion, you dont have any findings but Im not a Dr. I just happen to ask too many questions to my ALS Dr and this is all I've learned. A good dr will explain all of this to you and should!

I still worry (it is a little natural) but when a Dr performs an EMG to set your mind at ease and tells you, you have no findings on your clinical and no findings on your EMG, you have no choice but to come to terms with the fact that there are no findings which means no ALS which means you simply have Twitches. Your Vitamin deficiancy can have plenty to do with this and trust me, thyroid dysfunction can also have plenty to do with muscle fatigue and twitches.
Dont worry too much. I do know its easier said than done. You've been cleared.
Hope I've helped.

 

[PolarBear]

Jewelchic,

THANK YOU SO VERY MUCH for answering and also taking the time to read my post and posting this thread as well! It has helped me out immensely. I actually can't figure out how to PM as well. What your wrote about your weakness would really scare me, but I am so happy that the neuro said you were clean!

I have bad days (anxiety), but now three months into this I feel as strong as ever. I have some wierdness in one arm, but there is too much pain involved now for me to think ALS, and too much strength.

Learning about and fearing this disease, has made me very angry (PolarBear roaring, standing on hindlegs, swinging front arms in the air!) that there is nothing effective out there to treat it. There needs to be a cure yesterday. Im already planning for me and my family to do the local walk this fall.

Anyways, Thank you JewelChic!