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Antologia

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Finally I had my EMG, last week. I did not get the results yet, but when I left, the neuro said it all looked fine.

They tested 8 muscles: my biceps, between my thumb and finger, my upper leg and my shinbone. And that on both sides.

While I was lying there, I felt twitching everywhere, however the neuro said she didn't see them on the EMG.

I have increase of saliva. Why didn't they test my tongue? Of course I asked, and the neuro said it was a protocol to test those muscles when you don't have clinical weakness, except twitching, because those muscles were the most common ones.

So, now I'm afraid they might miss problems because they tested the wrong muscles. Is it true that they will find problems in all your muscles if you have ALS, not only in the one that you have problems in? Is it true that when the twitching is widespread, the muscle problems should be found in all muscles, not only one or two?

What would be your advice, when I visit my neuro tomorrow for the official results?
 
My advice would be to listen, and hear, what your neuro tells you. As you know by now, twitching is most often benign.

Be happy your EMG is unremarkable. And yes, they know what they're doing.

You don't, in my opinion, have ALS. Since you've been thinking you have it for awhile now, you must work hard on getting that notion out of your mind and be open to the wonderful possibilities in having your life back. Wish I could do the same.
 
Antologia,
When I did my first EMG, they only tested my right arm and hand because that's where my symptoms started. I progressively lost movement in my fingers. We were hoping it was just radial damage. But the nuerologist that did my test didn't say much to me. I figured because he wasn't my nuerologist. But he told technician several times that this one is good. I thought I was getting good report, but had severe nerve damage in Brachial Plexis, in right side of chest and arm pit area. Which pretty much led them to my diag.. Maybe they have to read over tests again to be certain, but I agree to just wait to go over your test with you. Good Luck !
 
Thanks for both your reply's.

Elaine, you have been very helpful. I understand what you are saying and I agree with you. I wish it was different for you too! I'm so sorry it isn't.

I did some research on the internet and found some cases like mine, with normal EMG, fasciculations widespread for a year or sometimes longer and they did develop ALS. I agree with you that these cases are very rare. But, and that's the truth, that is exactly why all those people keep worrying and keep coming back here. It's why your mind will never totally relax about the ALS-thing, once your body starts twitching and you don't have an explanation for that.

I think I can let it go after 4 or 5 years, but I won't be able to relax about this totally because there will always be a chance...

I do agree on you that I need to find a way to not let this ruin my life. I need to enjoy life as much as I did before and get the ALS thing as much out of my mind as I can.

Will talk about the neuro about that tomorrow.

Thanks again...
 
Antologia you have said exactly what I feel and why I'm still on this board. I have been twitching a year and have had "progression" of symptoms for around 4 months.

By progression I mean mild calf cramping, particularly in the left leg, numbness and tingling. I also get buzzing in my right foot and my right thumb and arm often feels weird.

I am stiffer on my left side than my right which has been confirmed by a highly respected physio. I have also developed a mortons neuroma on my left foot. So far no clinical weakness but I'm definitely stronger on my right side than my left which has been confirmed by my physio.

I have had normal clinical exams by 2 neuro who both run MND clinics here in London and my 1st emg that i had last week was normal. I'm waiting to see the neuro to discuss later on today.

So its all good news right? No for the reasons that you explained above. I feel like I'm now playing a waiting game where I need as much to pass as possible without any other symptoms developing.

I did a pilates class this morning and my left calf was twitching like crazy. My right foot arch was cramping. It reminds me that I still have symptoms and no, of course I don't want to be here with a diagnosis of ALS, but only time will hopefully show me that I'm OK.
 
mltg, have your doctor's said anything about bfs
 
No they have not given me any explanation. The neuro physiologist has said some people just twitch.

I've been on the bfs forum for a while but since I have started cramping I am not sure i should be on there. I know there's the cramping version of als but I've readbthat it's actually quite rare. Also they all say on there that twitching never precedes als but it can and it does! My neuro who is an expert in MND with internationally published work has confirmed it is very possible. Anyone that says otherwise is WRONG and kidding themselves. I therefore find it hard to concur with something that they say does not happen for fear of putting the cat among the pigeons and causing widespread panic.

I'm seeing my neuro thus evening and I'm hoping things will be fine and I can feel better about all this but while I still have symptoms REGARDLESS of the emg and clinical it's very very hard to relax.
 
I have been on the bfs site and there are many people who cramp, there is something called bfcs. I have read that people can twitch before the weakness comes, but from everything I've read, it's extremely rare, I think it affects less then 5% of new pals.
 
Sorry Antologia for jumping on this thread - all I really want to get across is that I know exactly how you feel at this point in Time. You are definitely not alone! It's horrible waiting to "see" but it will drive us mad so we need to TRY and calm down. Easier said than done though.
 
Slimva that's what I've read as well but it's not that rare according to my neuro who sees MND day in day out. I'm not wanting to scare anyone but I just think I would be fooling myself if I believed it was not the case.

When I asked him if twitching comes after weakness his words were

"It can but not always and yes its possible to have twitching as a first symptom"
 
Have you mentioned these symptoms to your Pilates instructor for his/her opinion?
 
No - I doubt very much he would know what I'm talking about. Even my physio who has worked for the British athletic team, England Rugby and boxing teams and in a busy A&E says twitching in the setting of physio is not that common. My pilates instructor is a nice chap but not medically trained.
 
Just wondering... I've read that Pilates certification requires extensive training concerning muscles, muscle tone-development and etc. Might be wise to mention to your Neuro that you participate in those classes. And... there are no doctors here either. :)
 
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He's very good but is actually a dancer in the west end! I can ask him but to be honest I can't be bothered as I'm seeing a neuro and a physio.

I appreciate no one here is medically trained and didn't mean to get embroiled on a discussion on someone else's thread - I really understand how Antologia feels and wanted to let him know that.

Thanks again everyone and sorry for jumping in.
 
Mltg, no problem jumping in... It's good to hear that you feel the same. By the way, I'm a she, not a he :)

I'm not an anxious person, never have been (I'm almost 40 now and this is the first time I'm really worried about something). It's not like I want to talk myself into ALS, better not, but I do want to be realistic. At this point, it could be something benign, but there is a chance this is the onset stage of ALS. If you read the studies, there are a lot of people starting with only twitching for a few years, before the clinical weakness is there. However, most of them do get a quick diagnoses when they get an EMG. Because most of the time the EMG is dirty. But nog always. Some people have 4 clean EMG's and then the next is dirty. That happens.

I sometimes think: why would this happen to me? It's so rare? But I sometimes think: why wouldn't this happen to me? Every year like 30 people my age get this diagnosis. All of them will thinks: this won't be it, it's so rare at my age and with this onset. But there are 30 people every year that get it. So...we only talk about chances. We just don't know what's in our future.

In the Netherlands there is not much you can find about BFS on the internet. In the articles about ALS, most neuro's say twitching comes before or together with clinical weakness. They say constant twitching because of BFS is rare. At this forum and the BFS forum they say twitching is very common. I'm not sure what to believe anymore.

What I do know, is that we must not let this ruin our lives. If we have ALS, we will find out some day. Time is our friend, as long as EMG's stay clean and symptoms won't get worst. The longer we stay without problems, the better. I hope we can respond to each other in 2020 and say BFS is what we have, not ALS.

The best would be if the twitching would leave my body, just as sudden as it came...
 
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