Could an EMG miss ALS?

[mltg]

Antologia, apologies for gender mistake! I had a 50/50 chance of getting it right!

I've just seen my neuro who said EMG clean as a whistle and no evidence of MND. I'm happy of course, delighted In fact but when you still have the symotons it's hard to ignore! You are right in saying we need to just get on with things. I've planned my next few days and weekend doing things with my 2 beautiful children and am going to try and get over it. It's the cramps for me that get me down more but the neuro says still can be benign especially as emg shown nothing. I waited 10 months for this EMG so I'm hoping it's not too early!

I've not been given any diagnosis of bfs or bfs. I don't think my particular neuro is bothered with any of that classification. It's either you have a neuro muscular disorder such as MND or MG or you don't.

Yes here's hoping these symptoms disappear. Good luck!

 

[Antologia]

That's good news mlgt!

I had my talk with the neuro last wednesday. She told me the following:

There were no signs at the EMG pointing to ALS/MND or a myopathie. My CK level was 74, which is absolutely normal. For now, that is very good news. However, she did tell me she could not guarantee this is not the beginning of ALS. In some cases, the EMG is clean, the CK is clean and people still develop ALS in the next 2-5 years. But, she also told me these cases are rare. In most cases, when people twitch because of ALS, the EMG shows signs.

She also talked to me about BFS. She could not diagnose that, because this can only be diagnosed after 4-5 years twitching without any other problems. Or at least that is what she told me. If I still twitch in 4-5 years, my EMG is clean and I do not have muscle loss or atrophy, it's probably BFS.

She also said that twitching can be benign without being BFS or ALS. Sometimes they just don't know. It can be ALS, but it is seen in completely healthy people as well.

We'll just have to wait and see. She told me she would discuss my case in her team this week. Because I do have some strange symptoms like pins and needles, jerks, increase of saliva and sometimes swallowing problems. This is not clinical, she couldn't find this when she did some test, but it could be because of some disease other then ALS. She wanted to talk about this in her team and see if they need to do more tests to find out if there is some other thing going on. She told me they don't do more tests very often, because mostly they just discuss if it is worth the costs. Most of the time they think it doesn't in my country.

If they won't do any more tests, then I will have a follow-up appointment within 6 months, she told me. Then I can tell her if there are any changes and maybe they will do another EMG at that time. She will call me next week on friday about the outcome of the talk in her team.

So, I'm not relieved, but I do feel the neuro is taking me serious and that feels good. She was clear this could be the very beginning of ALS, but the chance of that is small, because the EMG and CK level were fine. She also said that there might be something else going on, but she is not sure if more tests at this point are worth the costs (because mostly when there is no clinical evidence, more test show nothing).

What I do not understand at this point is the following: my neuro says, and so do all Dutch articles, that twitching widespread is more common in ALS then twitching at one spot. At this forum, most people (and their neuro's) say twitching is always starting at one spot and then go widespread. How come there is such a difference about this in 2 country's?

I also read about a study that looked at benign and malign twitches which showed minor/subtile differences, mostly in firepattern. Does anyone now about this study and what does "firepattern" mean? How widespread it is? How hard the twitches are? How many twitches per minute?

By the way, the differences were to subtile to use them to diagnose... I'm just curious...

 

[texastracy]

Drink tonic water for the cramps
Trust your doc tor
Live your life and enjoy it


When your up non-dominate hand looks like this and you have a dirty EMG, then worry.

Tracy

 

[Antologia]

Hi Texastracy,

I do trust my doctor. She was taking me very serious and believe her. Time will tell and for now I could not get better results then I got. I really do not want to be diagnosed with ALS, that's for sure. But I do think that when you twitch all the time, you just worry. If there was a button to stop that, I would push that immediately.

I do not have any atrophy, my hand looks nothing like yours. I'm so sorry you are going trough this. Thanks for your reply. I appreciate all those people answering questions and help us stop worrying, even when having so much problems themselves. You are nice people with big hearts....

 

[mltg]

Hi Antologia, I think that's great news. Pretty much same as me but my neuro has said he does not expect progression. I too have not been given a diagnosis of bfs.

I sometimes get pins and needles, numbness and swallowing issues but I do actually think that bit could be anxiety. If you have tight muscles that can cause these symptoms.

Some days are worse than others for twitching as well. Today I have hardly twitched but 2 days ago my left leg was going crazy.

We can't wait around expecting progression. We both need to get on and try to forget this. Who knows what will happen tomorrow. I had a friend who was only 43 who died from sudden cardiac arrest while out with her 3 young kids trick or treating. It was tragic. One minute there the next gone in the street. She was young, fit and so lovely. I think about her often and it makes me realise how life is very precious and unexpected. We can only control the present, not the future x

 

[Antologia]

Hi mltg,

I'm not sure my symptoms are because of anxiety, because I noticed them before I was worrying about ALS. But of course, everything is possible. I do not have good and bad days in twitching by the way. I twitch mostly the same everyday. But, when I'm busy, I do not always notice the little twitches. But the hard twitches or the hotspots I always feel, even when I'm walking or cooking or working.

Time will tell. I agree with you, life is precious and nobody knows what's ahead. A friend of my died last year because of cancer, my age. Anything could happen. As soon as we are born, we know we are going to die someday.... I just hope I can be there for my children in the next 15 years or so.

All the best for you. If there is any news, I will tell here. I think it is good for people like us to read the full story and hopefully they will see that we didn't progress in 5 years from now.

 

[worrywartken]

For what it's worth I've had widespread muscle twitching and numbness in different places along with a few muscle cramps for 5 years and no weakness yet I don't think....I've wasted a lot of time worrying about it doing all kinds of muscle tests that if anyone saw me doing them I would be in the mental institution....who knows maybe it will turn into something someday but for now I'm getting use to it

 

[texastracy]

Most of the people here that get diag nosed have gone through multiple other tests. I myself had a spinal tap, about 20 blood test, three EMGs, and a head and chest MRI to learn it have ALS.

Do NOT feel sorry for me. This is a journey that I've been sent on. It has already changed my life in ways that have only improved it. I appreciate every day that I live. I've seen children start a penny drive for research, and a sorority begin a t-shirt sale that every chapter of the sorority in the state got involved in. My employer has gone above and beyond in support of me.

I thank The Lord every day I am alive. We can not know when we will leave this life. You can spend it worrying or go out and experience it.

Tracy

 

[Mediasmart]

hi TexTrac....I like your hand. I have one just like it.

 

[Panos1978]

Hi Antologia and mltg,

I think i am exactly where you stand...
The only difference is that because its easier in my country i already had 7 EMGs in almost every muscle that can be examined over the last 2 months i am experiencing these symptoms.
I did that because of panic but also because i do believe that an EMG is an objective test depending on the experience of the Doctor.
Anyway - 7 clean EMGs and still not relaxed. I am always checking my tongue for fasciculations even thou i had EMGs in the tongue!
I am having now cramps like mltg said earlier. But mild pain in legs coming only after long driving or long walking.
Twitching is mainly coming for 1 or 2 times after i am using the muscle extensively (mainly in legs) but it disappears when i move the muscle...
Clinically i have quite hyper reflexes bilaterally but nothing else. No weakness. I really try to forget about it and move on with my life but its really hard.
I also heard about those statistics with regards to the twitches coming before weakness and a specialist also told me that this is extremely rare but it exists.
In theory though i do believe that if the twitching was because of ALS then the EMG should have caught the fibs and positive waves of the denervation.
At any case lets keep in touch and exchange useful information.