Why I don't congratulate anybody on their third, n-th EMG

[jerry2]

This post will step on many toes I guess and I will get flamed by many people.

But I am here for 16 months and I see same and same patterns all over. One has it's sixth or n-th clean EMG in a year, 2 years etc... and everybody is congratulating him/her for being "clear". I don't think that is "clear" at all.

First EMG may cleared him for ALS, but in all respect, all the rest are expected to be clean. But the majority who didn't have the neuros ordering the EMG's, it means to me, he/she can not deal with underlying anxiety.

Sixt clean EMG is nothing to congratulate in 3 years I think. It is obviously the person doesn't have neurological disease (the severe, degenerative one), I do not say person doesn't have problems. Sure he does, I also have them. But they are not the kind EMG would show in the first place and that is a known fact. What that means is that sixt EMG shows only that the person still suffers from heavy anxiety from ALS/MS and nothing else. EMG may be clean, but the believing it is still not there and as many pointed out, EMG won't calm your mind.

The more I read and the more I experience (I am not immune to this phenomen), it is really a sad phennomen. The twitching thing. I am at all not saying it is all in the head, I strongly believe it is NOT. But what the BFS bring with it is so destructive it reminds me of paranoid schizophrenia. I mean, if 5 doctors, EMG's, people here, FAQ here can not tell you you don't have ALS, you have to have a serious mental problem to begin with. Me included (I am no exception, I am just observing me and others here from their posts). The paranoid component seems for most to be lasting from months to few years, so it is not permanent, but the ALS obsession seems kind of fascinating.

I am HA person and as such I was "obsessed" about having various cancers etc. but up to BFS problems I didn't find such extreme inability to believe things/facts. I really didn't. I was obsessed by colon cancer and so were others on the forum, but after coloscopy most of us got rid of the idea. It was just not there. The BFS, partly in the nature of the beast and the nature of the disease we fear, is much more severe. The fact is in coloscopy if there is no tumor and the doctor doing it was not drinking, you have no tumor, period. Here things are more vague with stories someone developing ALS after I don't know how many years and EMG's (maybe he got it like every 1:100.000 does and he didn't have it all those twitching years!), but many people seem not to be able to move on. It is kind of frightening.

I consider myself a little more unlucky than most because the doctor didn't say I don't have it, he found some atrophy but he didn't know where it is from and anything was possible to him, but BFS was unlikely and such stories. I really didn't get any confort from the doctor and having some old atrophy I refused EMG because I believe it would show some abnormalities and I would be in even worse state than I was. But anyway, many people here seem to have good neuros, telling you that you don't NEED EMG and certanly you don't need 10 EMG's and a clinical every 3 months if nothing was wrong in the first place except the neuro symptoms we all share here.

I mean instead of congratulating yourself that the 5th EMG was clear, I would really and hardly think in myself what does that mean, how long the peace will last this time and if it is not time to leave neuros alone. Not becuase you don't have something real - I am yours - I know how really miserable I feel... but I don't believe any new "all clear" will cure your mind that is also severely affected by this ilness and rational thinking sesms to be impossible. I think the opposite, the more neuros you visit and the more EMG's you take, the longer will take to get rid of the ALS/MS idea. Of course you can get it once in life, but you don't have it now.

THat said, I realised I was to afraid at my neuro visit and I made a fatal mistake myself: I kept asking doctor if I can have ALS and he said that I may. I asked if atrophy could be from ALS and he told me it could. My question was wrong, because you should never ask doctor if you can have something - he will always tell you that you can. The doctor also made a mistake. He should add to the "you can" statement, another one: "It is higly unlikely with such symptoms!". And he shouldn't say I can not have BFS, but that is another story.

1. So never ask doctors if you can have something, because you always have and you are pushing him in a corner.
2. Don't repeat the tests as this is obsessive compulsive behaviour. I didn't go to neuros every month but I kept photoing my hand if there is more atrophy. After 16 months I still think there is more, but it is hard to tell on a picture. I found out I won't get answer in pictures and pictures won't calm me, they just made me anxious, because on some picture shadows are different etc... If my hand stop working, I'll know without pictures.

Don't take that personally, but that is my experience and from what I am reading and what I have a degree of made me realise this things go much deeper than twitching and pain, it seem to make people temporarly insane (or put it mildly, paranoic). I think bodily suffering is enough, no need to have the mental component with it for so long.

Sometimes I think there are 2 diseases: ALS and "thinking you have ALS". Of course the first one is beyond terrible, but the second one is not light either. At least it seems to go better in time.

[christo]

Sometimes I think there are 2 diseases: ALS and "thinking you have ALS"

I agree 100% with this one. I believe "ALS fear" is a mind trap for some of us, with GAD or HA. Problem is, if you twitch and ask a neuro if you can have ALS, he will probably always say yes. And then it will take so much time for him to feel enough secured to say "no, I am 100% confident you don't have ALS" that you could easily loose your mind before it happens. This may be a new disease, caused by the easy information availability on internet.

Now, for your particular case, I don't believe you can have atrophy for 16 months, no weakness, and still being suspected to have ALS. I think that maybe you could now reconsider going to see a neuro and ask for an EMG, because if you have atrophy, and even more if this atrophy is progressing, then there is something causing it. This is probably not linked to your BFS symptoms, but you should try to find out what is causing your hand atrophy and cure it. I understand this is really scary for you, and I understand that having an EMG could scare you more than you are actually, and probably for nothing. But come on, if someone else here had a hand atrophy for 16 months without weakness, what would you think ? Would you really believe he or she had ALS ?

Also I agree too much EMG will do more harm than good, but we are anxious people, and maybe some of us need this extra reassurance...

[jerry2]

Sometimes I think there are 2 diseases: ALS and "thinking you have ALS"

I agree 100% with this one. I believe "ALS fear" is a mind trap for some of us, with GAD or HA. Problem is, if you twitch and ask a neuro if you can have ALS, he will probably always say yes. And then it will take so much time for him to feel enough secured to say "no, I am 100% confident you don't have ALS" that you could easily loose your mind before it happens. This may be a new disease, caused by the easy information availability on internet.

Now, for your particular case, I don't believe you can have atrophy for 16 months, no weakness, and still being suspected to have ALS. I think that maybe you could now reconsider going to see a neuro and ask for an EMG, because if you have atrophy, and even more if this atrophy is progressing, then there is something causing it. This is probably not linked to your BFS symptoms, but you should try to find out what is causing your hand atrophy and cure it. I understand this is really scary for you, and I understand that having an EMG could scare you more than you are actually, and probably for nothing. But come on, if someone else here had a hand atrophy for 16 months without weakness, what would you think ? Would you really believe he or she had ALS ?

Also I agree too much EMG will do more harm than good, but we are anxious people, and maybe some of us need this extra reassurance...

I am not saying I think I have ALS after 16 months, I am not saying my atrophy is progressing, I posted pictures several times here and members seem to find the hands between now and last year the same. I think the mind is playing trick on me big time. I now look at hand at different angle and I focus on a slightlyx different part and I see 2 points of atrophy not only one. But I was focused on that first one a year ago. And I know what focus can do to a man. From my experience I believe this is some kind of psychiatric paranoia disease in me (and some others, no names), because if you can not believe the facts and see zebra instead of a mouse, you are clearly having hallucinations. I guess I am also hallicunating about my hand.

Here is the fact: My hand was atrophied a year BEFORE my bfs started. I am not sure if the same or a little less, but it was noticable on a picture from my vacation year before. And guess what! I never noticed how the tendons stick out of palm in one hand and how much smaller and dented my thenar muscle was there. I thought it is impossible that this is something I had before, but hey: I did. I have a pciture that proves it. I just didn't loook at it and I wasn't scared by it. So this is clearly paranoic behaviour.

About taking EMG, I think one is enough for anybody. The point is I don't see any extra reassurance in having more. It is the "head" problem then, not the EMG.

I almost took one, but since I've read a few months ago what happen to Tobes, I decided not to. Because that is exactly the thing I fear the most. They find something wrong, but don't have a clue what it is. And as the hand is somehow atrophied (it was always weaker than the other one I guess, I can still open bottles with it etc.) I don't believe I can have all clear. And I don't think all clear could ease my mind as I can not think I am better than everybody else here. On the third note, if it happens I do have ALS, and I can still function.... I rather leave it till I will start dropping things down. I have much hope it is not ALS. I really don't wan't to know if it would be at that moment. And clearly nobody would give me a "you don't have it" as nobody did and I believe nobody would. I asked my neuro if EMG would be 100% that I don't have ALS and he told me: Nothing is 100%. So here you go... grrr...

[christo]

Jerry, my neuro also told me there is no 100%. He also said he didn't believe I have ALS, but he won't write on paper that he is 100% sure I don't have ALS. We need to accept this, and it's hard, believe me I know it.

On the third note, if it happens I do have ALS, and I can still function.... I rather leave it till I will start dropping things down.

I perfectly understand this point, I am thinking the same way as you. The fact is you don't have ALS

I almost took one, but since I've read a few months ago what happen to Tobes, I decided not to.

I really, really understand this, and I believe your are 100% right to think like this. I believe that whatever is causing your hand atrophy, it's a really slow progressing thing. Maybe a pinch nerve somewhere. Just saying that if you start having more trouble with this hand or arm, don't think ALS and go see a neuro. Don't ask him if you have ALS and he won't search for ALS. Remember, ALS is an exclusion diagnostic, if you go to a neuro for an atrophy in the hand he will search for anything before ALS (and probably before even thinking ALS, since you don't really fit the picture)

[jerry2]

Jerry, my neuro also told me there is no 100%. He also said he didn't believe I have ALS, but he won't write on paper that he is 100% sure I don't have ALS. We need to accept this, and it's hard, believe me I know it.

On the third note, if it happens I do have ALS, and I can still function.... I rather leave it till I will start dropping things down.

I perfectly understand this point, I am thinking the same way as you. The fact is you don't have ALS

I almost took one, but since I've read a few months ago what happen to Tobes, I decided not to.

I really, really understand this, and I believe your are 100% right to think like this. I believe that whatever is causing your hand atrophy, it's a really slow progressing thing. Maybe a pinch nerve somewhere. Just saying that if you start having more trouble with this hand or arm, don't think ALS and go see a neuro. Don't ask him if you have ALS and he won't search for ALS. Remember, ALS is an exclusion diagnostic, if you go to a neuro for an atrophy in the hand he will search for anything before ALS (and probably before even thinking ALS, since you don't really fit the picture)

I understand the 100% part, I don't like the not telling me he believes that I don't have it part But it is now less and less a problem for me. THe post was about something else, not me About the seriousness of the mental condition that can be called some kind of psychosis.

[jerry2]

I really, really understand this, and I believe your are 100% right to think like this. I believe that whatever is causing your hand atrophy, it's a really slow progressing thing. Maybe a pinch nerve somewhere. Just saying that if you start having more trouble with this hand or arm, don't think ALS and go see a neuro. Don't ask him if you have ALS and he won't search for ALS. Remember, ALS is an exclusion diagnostic, if you go to a neuro for an atrophy in the hand he will search for anything before ALS (and probably before even thinking ALS, since you don't really fit the picture)

Yes, and here was my SECOND mistake. Instead of going to a neuro and telling my symtpms and ask what he thinks about them, I was so TERRIFIED and so CERTAIN I have ALS that I came into the office and said to him: "I think I have ALS". He is only a human after all (a tough one to be able to do the work he does) and I believe I may have distracted him by this, I made him focus on this, put words in mouth. As he is ALS specialist he took this seriously. I should not came there saying what I think I have. But to my defense, he should of noticed my mental health. My hands were so shaking he asks if they always shake like that and I said no, I just think I am dying of ALS and that I have some hand atrophy. And he took the hand and said: Indeed, there is some atrophy. At that point, I was 100% sure it was my death sentance. But he found no weakness in my hand and then he got more relaxed, but asking questions if my hand can be atrophied by ALS was stupid. Then I found some 1 year old picture wheree the hand looked the same (but was not a nice good picture, but the atrophy was seen). That shows it is not fast progressing although I've had here the first twitch, I've had numbness, I've had slow crawling twitching and lastly I had twitching when I hold something...

[Yuliasir]

he won't write on paper that he is 100% sure I don't have ALS.

I think he wouldn't also write that you would not have a stroke for sure or the brick would not hit you next 5 minutes out of the office...

Doctor is medically right )) He or she is not a Cassandra neither Apollonus, a god of both medicine and prophesy. How could he or she be sure that your life would go in that or this way...

but when the doc says - FOR NOW YOU DO NOT HAVE IT - I think we have to take that as a reassurance and a sign to live on.
we all would die. that is the only true knowledge we have. "But the uncertainity is our blessing", as Ursula Le Guin said in her beautiful Left hand of the darkness...

[jerry2]

Of course if I got: "For now you don't have it" I would take that as reassurance.

[stephane28]

Yes, and here was my SECOND mistake. Instead of going to a neuro and telling my symtpms and ask what he thinks about them, I was so TERRIFIED and so CERTAIN I have ALS that I came into the office and said to him: "I think I have ALS".

Haha I agree with you. I never talked to my docs about my fears and all the things I read on the Internet. I just told them my symptoms not even talked of my anxiety. And the fact is that none of my docs (either GP or neuro) pronounced those three letters. They talked about MS, neuromyotonia, Lyme, Lupus, Polyarthritis, and of course BFS but never about ALS. I prefer that

[jerry2]

The fact is if I wouldn't say my neuro what I was worried I guess he never would mention that I could have ALS at all. He found nothing wrong in clinical except some hand atrophy without weakness. Putting expectation in his mind is not a good thing I guess...

[mwagner]

Great post, Jerry - I agree with you fully.

Most of our neuros just ordered EMGs, because they knew that we wouldn't be calm without them. My neuro said "I know you have googled, and the only way you'll think you're okay is if you have an EMG". He also said "I'm 95% sure you're okay, but the EMG will make me 100% sure".

But, really - the problem isn't only with us. It's the neurologists who want follow-ups. So many seem to, "just to be sure". I wish neuros would just say, "come back to me if anything seriously changes" instead of having 6 month follow-ups.

I refused to even follow-up with my neuro after my EMG. I just didn't want to deal with doctors anymore. My EMG was enough. While I still have bad days where I wonder if I should have gotten a follow-up, thanks to this board, I'm usually realizing my symptoms are no different than anyone else with BFS.

Mitra

[jerry2]

I also agree with you fully. I've read hear about many people neuros want them to come back in 6 months and then again in 6 months... that is not reassuring, becuase this is making people believe twitching can go on for I don't know how many months before anything shows up. And to my knowledge, this is not the case at all...

I think it is good to have EMG. I just don't think 6 of them needs to be done. One is enough. I like to think if I survived without one for 16 months I can survive further

[mwagner]

Absolutely Jerry. You obviously never needed one to begin with. If you had had anything degenerative, you would have known by now. I have full confidence in saying that.

That was my first thought with all this. If I survived a year with the twitching, then I could reassure myself that it wouldn't be anything too bad. But, I had a panicked moment, and felt like I had to have an EMG. And just like the many people on this board who have had one, we all seem to have doubts about them afterwards (e.g., maybe it was too soon, maybe they didn't give me the full results, maybe they didn't do all the muscles they should have), so I'm not even sure they're that useful to give you peace of mind. I had about an hour's worth of peace of mind, before the anxiety kicked in again. The only TRUE thing that gives you peace of mind in this process is time. With time, you get used to your twitching, and you get more and more accepting of the fact that it is part of your nature, and not something horrible. My arms were twitching like crazy yesterday watching TV, and normally I'd worry, because I'm more of a calf twitcher, but I'm getting to the point that I just stop and think "stupid BFS" and move on.

But, I'm going to reiterate that I think it's faulty of the neuros to ask for 6 month follow-ups when they are giving a benign diagnosis at the same time. As we know, there is no way of really treating BFS, except maybe to reduce stress.

Mitra

[jerry2]

I agree. You seem to be similar to me, I also have this days so many shoulder and back twitching and some back ache and wierd crawlings I don't even dare to look at I am usually more "limb man" not a back/shoulder twitcher. And I was leaning on my left arm and all of a sudden like a electric outbreak my space between thumb and index in the aatrophied hand started vigirously twitching, very fast and very strong, like some energy discharge for about a minute. Now I can provoke it with stretching this muscle but it doesn't do it alone.

There are many new symptoms (different intensity, places, speed), and I have to read my note I don't have ALS (that I wrote myself). Why should now a back twitching worry me if this is going on for 17 months, why is now different than it was. The fact is that it is probobaly not. I will soon break the barrier of even remotely hear somewhere that one twitched before other symptoms.

I wish I could call a neuro and he would say to me: "Don't even tell me further, after a year and half, this is no ALS. Stop right now". Of course such neuro doesn't exist.

To go back on topic, 6-month returning because neuro told so is a sure way for the panic to spread. This causes uncertanty for nothing.

[talltwitcher]

Yesterday all of the twitching gremlins took their trampolines and headed to my back. I was setting next to my wife when she suddenly said,"What is that?" It was my back thumping so hard she could feel it. After eight years AlS does not even enter my mind. I had the tests with the neuro at the beginning of course he cleared me. He said 90 percent is all you will get from me on anything.

Of course eight years has cleared me of the other ten percent. I had a good friend die of AlS. I can tell you thumpers in the back and 99.9 percent of what you hear on this forum has nothing to do with his experience. It is interesting I have known of three people with AlS and non of them suffered from anxiety from twitching before they were diagnosed.