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bobajojo

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If an EMG detects fasciculations in calves but was otherwise "normal", is this a clean EMG? The reason I ask is because my twitching has gotten much worse since my EMG (which was 2 weeks ago) and the neuro at the time said that my twitches look to be benign but when I asked if ALS could be ruled out, he said "no, not until we see the 6-month follow up EMG and compare for any changes". As many people on this "Do I have ALS" forum, I am scared. I have seen many people say clean EMG= no als, but I'm not sure mine was clean since it picked up true fasciculations in my calves. Since the test, I've had the tiny twitches appear all over my hand and popcorn type twitches EVERYWHERE else. When I lay down, I get like 20-30 per minute in my back, legs, arms, abdomen, ... everywhere.
 

Ms. Pie

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What are your symptoms other than twitches? That must feel terrible!
 

bobajojo

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I get cramping in my hands, forearms, and ankles. The twitching is like popcorn all over my body and happens while exercising.
 

Ms. Pie

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Try and stay calm until your next appointment with your Neurologist. I'm pretty sure you'd experience weakness in legs or hands or some other area before fasciculations. That's the way it was for me.
 

notme

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With just the twitches, try to relax. It's very probable it's benign fasciculation syndrome (which is very annoying, I'm sure) It is a very good sign that there is no denervation or renervation going on. That is the hallmark sign found in EMGs of those with ALS. In UMN ALS, there are a lot of issues with spasticity seen on clinical exam.

Your doctor is being thorough by doing a repeat in 6 months. But, in the meantime, see if they can treat the cramping. If the ONLY thing found is fasciculations and you had a normal neuro exam otherwise--I think it's safe for you to stay calm for now.

Does that help any?
 

trfogey

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Ask a theoretical question -- get a malpractice-suit-avoiding answer. Congratulations, your obsession with all things ALS has bought you six more months of anxiety about a disease that it is unlikely that you have, but see around every corner despite the vast majority of the evidence going the other way.

Two different BFS patients chimed into your last thread and gave you some very good advice. I suggest that you go back and read it again, then put it into practice. If your neuro said that your twitches look to be benign, why not act as though they really are benign and learn how to deal with what it is almost certain that you have? Couldn't hurt -- might help.
 

notme

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Allen, you're much more up on things than I am--I hadn't realized there was another thread.

Al: Don't yell at me. I didn't KNOW they had another thread.

#1 Feeder going off now.....
 

Al

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See there you go being a wise guy (girl) again. LOL

AL.


PS. I didn't know of another thread.
 

bobajojo

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I apologize if I broke a rule here, I'm new to this forum. Yes I did have another post a month ago. Thank you all for your replies. -Matt
 

notme

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You didn't break a rule, Matt. It just helps if all symptoms, etc, are kept to one thread so those of us with memories not as good as trfogey's can keep up with the entire set of symptoms/treatments/tests.

What trfogey was trying to make you understand is that if your test was clear now other than fasciculations that it's very likely to be clear still in 6 months.

Please understand that in ALS the fasciculations are usually seen when there is already damage done that is easily spotted on the EMG. The one in 6 months is more of a CYA then the doctor thinking you're going to be worse then, so try to relax.

I had NO fasciculations in my atrophied areas until after the weakness and atrophy had begun if that comforts you. BFS is more common than you'd think.
 

trfogey

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It's not that trfogey's memory is so good. I just make a habit of going back and rereading previous threads started by the poster to see what was said on earlier visits.

Matt -- the point I was attempting to make was two-fold. First, no doctor is going to tell a patient that presents with fasciculations and cramps that they are absolutely clear from ALS without an extended period of observation -- anywhere from two to five years. That was a naive hope on your part, which you might have been warned against if you had taken advantage of the BFS resources other members recommended in your previous thread.

Second, the fact that you brought the subject of ALS up on your own kicked your neuro into CYA mode, just in case you're one of the "sue the doctor because I don't like what he's telling me" types of patients. Now that you've shown yourself to be a "prove to me that I don't have ALS" person" instead of a "I twitch, so what" person, he's going to be very careful in what he says to you and he will be very conservative in his treatment decisions. That attitude by a doctor is extremely frustrating for the patient but that's the way the practice of medicine goes these days.

If you want your doctor to change his attitude, you'll need to change your attitude. Simple as that. If you require 100 percent certainty, you'll be waiting for a very long time to get it. If you're willing to settle for less certainty, you already have enough evidence to believe that you don't have ALS. It's up to you -- be picky and suffer the anxiety of not knowing, or start treating your current "symptoms" as simple annoyances and get on with your life.

Good luck to you, whichever you choose.
 

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Thats just the best darn thing I have read in ages, Brilliant explaination.
 

bobajojo

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Trfogey, notme- Very well said. I want to thank you both for taking the time to help others on this site. You are wonderful people. God bless. -Matt
 
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