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Elise

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Hi,

I read a thread over here where some people were arguing about clean emg at first and later developed in bad emg resulting in ALS diagnose.
I'm very confused about this because some members say this is not possible and others say they read stories on here about it. Because of that I went reading post after post and I found some people with an initial clean EMG and even people who had twitches for years before developing weakness. I'm very confused about this because I'm not medical trained but I will mention the posts I read about.
1. Lori (was diagnosed with benigne fasciculations and pn) Clean 1st EMG: https://www.alsforums.com/forum/general-discussion-about-als-mnd/5040-my-journey.html

2. SpringOwl had clean emg:https://www.alsforums.com/forum/gen...kness-yes-balance-problems-no.html#post119594

3. Manwithaplan had 1st clean emg and localized twitching: https://www.alsforums.com/forum/do-...tive-babinksi-sign-foot-drop-same-side-3.html

4. Artisto had twitches and 1st clean emg : https://www.alsforums.com/forum/do-...amyotrophic-lateral-sclerosis.html#post135669

5. ConnieS: https://www.alsforums.com/forum/do-i-have-als-als/9099-diagnosis-more-questions.html

6.Comfortable with ALS:https://www.alsforums.com/forum/do-...tive-babinksi-sign-foot-drop-same-side-3.html

These are just a few that I remembered but I read more. Why do some say this is not possible if you can easily find this stories? I hope someone can explain this because I don't understand this anymore.

Elise
 
You need to be careful as not everyone on this forum has ALS. We have a section called "Do I have ALS? Is this ALS?" where you got these stories from. Please don't jump to conclusions. There are a few people who had twitching and then were diagnosed with probable ALS. The thing to be aware of is that everyone has twitching, usually they are unaware of it, but not everyone gets ALS. A clean EMG means no ALS. Period. Please be careful reading something into these posts that is not there.

Another thing to be aware of is the fact that you can have a clean EMG today but that does not mean it will be clean several years later. You could still get ALS in the future.
 
Hi Joel, I have to admit, I've read these peoples stories as well and now I'm really confused. Not that it matters but there does seem to be some different info being tossed around.
 
Very few of them have a probable ALS diagnosis. The majority have discovered they really don't have ALS.

This is one reason I am starting to question why we have a “Do I have ALS? Is this ALS?" section. It tends to promote a lot of misinformation. People assume everyone on this forum has ALS which is simply not true. A lot of experiences and symptoms are being thrown around by people who do not have ALS but think they must have it.
 
I agree Joel, the people who asked for that section long ago, all ended up without ALS or MND.. So that is an answer it itself, I think that sometimes all this nervous banter hurts those who really want to be here, and need to be here. It is quite discouraging at times..
 
Well I'm surely not trying to contribute to the nervous banter, but I am one that doesnt have to many places to go with my symptoms so I hang here some days so I dont feel quite so alone with my symptoms. I dont post much ever, I just read and try to help a scared newbie here and there that sound more like a BFS case rather then them hang out here and make themselves crazy like I did months ago. No offense intended.
 
ok, but the people I mentioned here they all ended up with having ALS after having a first clean EMG, that's what worries me.
I myself had a clean EMG but the past weeks I've been declining. Gait problems etc. My doc now thinks I do have mnd. I'm going to be retested in 2 weeks.
 
Well I am one of thos people that thought I had a "clean" EMG before eventually being diagnosed with ALS. Two things I later learned, first my first EMG and which I know now was not very comprehensive, they only poked a couple muscles, and the Neuro was not an ALS specialist. They were looking to see if perhaps there was an issue with herniated discs or what not in my spine disruting communication with my leg muscle. Then when I finally saw a MND specialist he looked at the first EMG results and said frankly I need to do another one because I am questioning these results based on the clinical exam he had just completed with me. Then he did an EMG, a very thorough one, and I did not thoroughly understand everything and confused him not being able to "clinically" diagnose me yet with ALS with a clean EMG. As I became more educated and learned what questions to ask I realized that my second EMG, the first with the MND specialist, it wasn't that is was clean it was that he did not find denervation in enough muscles and regions to officially diagnose me with ALS even though he was positive that is what I had. He scheduled me for another EMG 3 months later and with the progression the denervation was now present in the required amount of muscles and regions to diagnose me with clinically definite ALS.

So in some cases it may be not that the EMG was not 100% clean but it was not "dirty"" enough to call it ALS. That was my situation but I just did not realize it until later.
 
I agree with what others have said here

1] sometimes it is not made clear that the person posting, actually has not been diagnosed with any form of mnd.

2] It is never as clear-cut as just one test result, whether it be EMG or something else. It is the entire picture that the neuro looks at, and many requirements have to be met to receive a diagnosed of ALS. There is a sticky about this, and you can read the El Escorial, which is the standard doctors follow for levels of diagnosed, from "possible" to "probable" to "definite" ALS. This is important, because so many people who are afraid they might have ALS want to pick and choose what applies to them, and it doesn't work that way. Its EVERYTHING which matters. What a person has going on, as well as what they lack.

3] It seems like the "Do I" forum has been overrun with people who are suffering from anxiety and cyberchondria, and its a shame because there truly are those out there, who have valid progressive physical problems, and they need somewhere to turn for support. I'm thinking of people who don't even post that much any longer, maybe because they, too, feel overtaken by the Nervous Ones. ~ Members such as CB1977, Lydia, CrystalK, PlanningGuy, and yes, Robynnblue. I'm sure there are plenty of others, which I've missed naming, or missed even catching any of their posts, because after too many "ReallyWorriedGuys" and "TStewart31s", I can't bring myself to even visit the "do I" forum, and have to take a break from it.

4] Very few people who turn out not to have ALS, despite dirty EMGs continue to post much. (Limegreenphysicist and TAG0620, thank you for continuing to come back and help others!)

5]One thing which has not been mentioned in this thread, is that typically, the longer it takes to receive a diagnosed in the MND family of diseases, the slower the progression goes.

I am one of those very few people who do not fall into any specific category of MND (Yet.) I have had two EMGs diagnostic for MND of my bulbar region, but, after I developed clinical/objective weakness in my limbs, my last EMG of limbs continued to be mostly normal. (it was not an overly comprehensive test, just a few sticks. Their point being that it should have shown up after the amount of time which had passed,) In the past I have had an abnormal single fiber EMG, but Myasthenia Gravis has been completely ruled out. I have abnormal reflexes, and no other underlying disease can be discovered. So, at this point I have a MND variant, with no precise label put on it. My doctors have told me that sometimes there just is not a name to put with an illness, and that I have a system wide illness that affects my motor neurons. In the beginning, when my weakness was confined to the bulbar region and breathing, my diagnosed was PBP. (Although atypical even then, because my voice grew weaker before my speech was affected.) What is most striking, when I compare myself to others here, is that it is a slow progression, and this is quite rare for bulbar onset of als.

A VERY few, such as Just J's husband, eventually received a diagnosed of ALS despite clean emg. The diagnosed was based on very qualified doctor's clinical observations. . Before this, he had a "probable" PLS diagnosed, but his illness did not progress in a manner which ultimately supported this. He developed rapidly progressive breathing difficulties. Sadly, I believe he passed away. Please, if anyone reading this feels compelled to contact Judy, please be respectful of her apparent wish to take a break from this forum. She has not come back and formally let the forum know of his passing.

There have been members who had incorrect diagnosed of ALS, and eventually were discovered to have problems stemming from back injury or cancer. Both of which are treatable, and valuable time was WASTED! In the cases I am aware of on the forum where this happened, it was neurologist error, due to lack of thoroughness...? arrogance...? BUT, that is why I feel it is so important to not to try to steer your doctor toward what YOU think is your diagnosed. We just don't have the training and expertise. As someone else said, we don't want to insist our doctor be hunting for zebras, if its really a horse they need to track down. If we aren't confident with our doctors' assessments, we need to go to another doctor and another, etc.


So, any form of MND is relatively rare, and common sense needs to be in the lead in how to pursue a diagnosed. 99.999% of the time, if it walks like a duck with a normal EMG, that duck does not have ALS...
 
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Rose,

Your post is probably the most informative entry I have read on this forum. It should be required reading.

Northern Dancer
 
Diane,
As always a thoughtful and amazing post, I hope that everyone reads this, it really makes so much sense. I think you have such a kind and caring way of presenting very important and concise information. I was not aware about Judie's husband, gosh that is so sad. If you do have contact with her, please send her a hug from me. I am really sad to hear this. Again thanks for the post.
 
ok, but the people I mentioned here they all ended up with having ALS after having a first clean EMG, that's what worries me.
I myself had a clean EMG but the past weeks I've been declining. Gait problems etc. My doc now thinks I do have mnd. I'm going to be retested in 2 weeks.

Not true. All the people do not have ALS. Lori, for example, does not have ALS. I hope you don't either, only time will tell.
 
I was one of those people on here seeking information prior to being diagnosed with ALS. I worked in the medical field for 21 years and I knew that what I was experiancing was not normal and I researched everything I could within my means because after 2 months of twitching and then starting to notice weakness in my left hand I saught out medical help from my primary care doctor who noticed muscle atrophy and clinical weakness that I was not even aware of. She then referred me to a Neourololgist and after a dirty EMG and normal NCS I was referred onto a ALS specialist.

No one on here ever said they thought I had ALS, thankfully even if they suspected it. It is a place to get information only, not a diagnosis. We are here to support one another and some of those early fears are warranted, mine was. When there is so much time in between seeing specialist it is nice to have this forum to bounce ideas and questions off of others. Understandably, alot of the people on here it takes all the physical strength they have to respond on here and for some it is there eyes or their voice that types for them and we need to be sensitive to where they are.

I am forever grateful to all of you who have responded to my posts early on and continue to. I am a PALS and I now type with my right hand and one finger on my left hand. May God give us the strength we need each day to be of service to one another.
 
I am one of those "scared and confused" posters whose loved one turned out NOT to have ALS. In the weeks that we waited for testing, results, etc. this forum was a lifeline. For every person who comes here to obsess or foster anxiety, there is another who comes for support and information, and many of those who do not develop ALS will leave much wiser and richer for the experience (I know that I have, and will be a lifelong supporter of ALS research/support). So even though I know that this section can be very, very frustrating for the PALS/CALS regulars, I want everyone who comes to this section and offers support to know the immense good that it does, too-- even though you may not always know it!
 
Thank you for your post! I am extremely happy it turned out not to be ALS.

It is very unfortunate that the "obsessers" make it hard for the people who come here for support. We have had a number of them lately that will not accept what we have to offer and have chased away a lot of people who have great advice to give. They will not frequent the "Do I have ALS? Is this ALS?" section anymore. That is a shame but I do not blame them. The best people are those that are far along with this disease and have trouble typing. If they have to continually repeat themselves it is hard and they give up. The caregivers that have great experience to share find it insulting when people will not listen and they don't come back. All this section will very soon be left with is the people who think they have ALS which will further fuel everyones worst fears.

To those that come here for support and are respectful enough to listen to our opinions we welcome you. Please remember that we are not doctors and are not qualified to give you a diagnosis, only our opinion. We are qualified to give support to those that have ALS and that is all.
 
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