Old 11-14-2015, 10:30 AM #1 (permalink)
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Default Posting update and wanted some clarification. Also maybe my story can help others

Hello, this is Royce. I have posted a few times on this site and wanted to post an update on my progress and also gets some clarification and thoughts. Atsugi has been very kind to answer my concerns in the past and I'm appreciative of that. I have had muscle twitching mainly in my right leg, calf, thigh, area between calf and ankle, and arch of foot. I do have twitching elsewhere but mainly in right leg. I also noticed my right leg thigh muscle and calf is much smaller than the left. In the stickies it is mentioned that atrophy can be an early sign, but some have said atrophy doesn't happen until the muscle has already been paralyzed. Can I get some clarification on that? I did have an emg and a nerve conduction test done only on the right leg and right arm by my neurologist. He said there is chronic nerve damage in my right thigh but not ongoing nerve damage. He had no explanation for why. He also said the emg showed no signs of als and said the emg points more towards cramping fascicullation syndrome. There was one muscle in the thigh he didn't test which is the small one attached to the knee called the vastus medialus which is the muscle that is smaller than the left leg. When I emailed him about it he said als would not affect one muscle. Even after the emg I'm still having concerns due to the muscle twitching worsening in the right leg and the appearance of atrophy or noticeable size difference. I have not experienced clinical weakness in that leg but definitely notice a weaker thigh muscle when trying to exercise or work it out. Unfortunately I've read so much on als diagnosis and symptoms, some being progressive and some being immediate I don't know whether to continue pursuing my concerns or not. Appreciate any thoughts and hope this post helps others in some way. Take care.
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Old 11-14-2015, 10:53 AM #2 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Hi
There are of course many causes of atrophy, assuming that is really what you are seeing. In my case my atrophy began after clinical weakness. Significantly after. And that is how it goes in ALS weakness then atrophy. Given your exam and your EMG plus your history it doesn't sound like ALS to me. More importantly your neurologist said no signs.
Should you pursue this? Yes if it is bothersome and / or concerning. Pursue it with an open mind. By this I mean your question should be what is wrong with me ? Not do I have ALS? I really believe too many people take that approach and make it a closed end question. The doctor can say no and move on. What is wrong with me opens up the issue

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Old 11-14-2015, 12:42 PM #3 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Hi Murcie,

It is true people do have slightly different experiences of exactly how this disease plays out for many reasons. However you have been given every reason to know that whatever is happening with you is not ALS.

In my husbands case atrophy and weakness were happening at the same time. The clinical weakness was the huge hallmark - it wasn't a dent, it wasn't - one side is a bit smaller/different to the other. It was muscles wasting away and progressive clinical weakness.

Do pursue your concerns, but use Nikki's guideline and do it with your doctor rather than here as only your doctor can work with you closely on this.

All the best
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Old 11-14-2015, 01:30 PM #4 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Nikki and Tillie, thank you so much for your replies. I saw two neurologists and neither said I had clinical weakness, but one went ahead and did an emg on the leg that I have been having trouble with and said that it pointed towards cramping fasciculation syndrome. How accurate are these emg's based on what the both of you know and experienced. Now he only did right leg and arm which are the ones bothering me. Bless the both of you for taking time to help others. Royce
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Old 11-14-2015, 01:54 PM #5 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

"How accurate are these emg's"

Perfectly accurate. I've never heard of ALS being missed by an EMG.
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Old 11-14-2015, 02:41 PM #6 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Hi Mike. Thanks again for your valuable input. So an emg doesn't necessarily have to target the specific muscle it will pick it up in a general sense? Thanks again.
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Old 11-14-2015, 03:58 PM #7 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

You've been examined by a couple of neurologists and they are not concerned about ALS. Neither should you be.

As Nikki and Tillie said (they're very smart on these things), you should ask you doctor to pursue your health concerns, but you don't need to worry about ALS.
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Old 11-14-2015, 05:41 PM #8 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Murcie, to see ALS on EMG requires widespread acute and chronic denervation. The process that makes ALS what it is means that motor neurons are dying in lots of places, now and in the past. Thus, acute and chronic. So no, missing a particular muscle does not change anything.

As general education, let me echo what Tillie said about atrophy. Flesh looks like it has melted away. We are not talking dents or different contours of an arm or leg. We are looking at a difference a two-year old could see.

If you can still do what you've been doing, there is no clinical indication for ALS either. So you need to be done here, as Nikki says, going back to the neuro if/as you have issues that prevent you from living your life. And if s/he says you do not have a neuro issue as time passes, a primary care practitioner to get help for your general well-being and anxiety. All the best.
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Old 11-15-2015, 12:18 PM #9 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Igelb, thank you for your reply. Just to clarify your first statement "to see als on emg requires widespread and acute and chronic denervation" do you mean that if you have als the emg will detect it in any muscle? So missing particular areas are irrelevant. Sorry, I was a little confused by what you meant in the first paragraph. Thank you again for your comments. I very much appreciate the time all of you take. Take care.
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Old 11-15-2015, 12:33 PM #10 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Not every muscle in the entire body no. But it is completely unnecessary to test every single muscle to know everything is ok. Plus even IF there were something found in that one muscle it would not be ALS. As Laurie said it needs to be widespread. Any sampling of muscles in an affected area is sufficient for a rule out. Really. Now please do listen to our advice about moving on from this. Thank you
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Old 11-15-2015, 06:53 PM #11 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

OK. Thank you Nikki so much for your help. All of you are special people.
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Old 11-30-2015, 06:50 PM #12 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Nikki and Tillie, does constant muscle fatigue in the legs and burning feeling in the muscles points toward any early symptoms? Thank you again so much for all your helpfulness again. I'm still pursuing whatever this is.
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Old 11-30-2015, 06:59 PM #13 (permalink)
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Default Re: Posting update and wanted some clarification. Also maybe my story can help others

Sorry, murcie. You were very thoroughly cleared of ALS.
You may say you appreciate our time, but I can't let you take any more of it.
Please respect our wishes, and let us concentrate on those who are dealing with ALS.
You need to go find a different place and deal with your non-ALS problem there.
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