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Alexandre

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Learn about ALS
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Hi,

Sorry , I'm here again. In my last post I said I noticed , what I think, is atrophy in my hand. Well, I went to the neurologist with it, this man is a neuromusc. specialist.

He said he didn't think this was atrophy because I have no weakness that he could detect.
He asked me to place my hand flat on the table with the thumb next to the index finger to see if the 'bulk mass ' is the same, and it is.
However when I hold something you can clearly see a big difference with my other hand. I'm very confused. I also feel very tiny tickling (twitches?) in that place. I also have the feeling I'm having little trouble with my thumb.

I really don't want to bug you with my questions but this 'atrophy thing' has really scared me. I know if this is atrophy that it could be something other than ALS but combined with the fascics...in don't know....

I've attatched a pic here - it's the right hand. The dent is deeper than the picture showes and stretches to the index finger
I'm so confused that the neuro didn't notice the atrophy. Could the neuro have missed the atrophy? What do you think of the hand?


thank you very much
 

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That photo looks NOTHING like the atrophy my father has in his hands... not even a bit. In fact if I compare my own two hands they are different from one another too and look a lot like the picture (except more feminine and prettier of course.)

What I don't understand, Alexandre, is why you keep asking our PALS and us CALS here, if we think you might have ALS when everyone on this forum who has first-hand experience with ALS has unequivocally told you, "No, it doesn't sound like ALS to me."

While I sympathize with the fact that you have a bunch of physical changes happening to you, it just seems odd to me that you would keep coming back here, for 7 months now, especially after having a neurologist tell you that you do not have ALS, only to keep asking the same question over and over "Do I have ALS?"

Here is how ALS can devastate a person physically: since you joined the forum in June, my father went from walking with a cane, still enjoying his favourite foods (albeit slowly) and slurring his words to now being completely bed-ridden, with no use at all of his lower body, unable to raise his arms or head, unable to talk at all and unable to swallow or breathe on his own. I know that people have been quite adamant and curt with you in the past, and that is because we are emotionally charged people dealing with real life ALS so somedays it's hard to read posts like yours. Today is one of those days for me. While you have asked the same question for months, some of the readers of your posts are in the process of losing mobility or watching their loved ones lose more and more of themselves week after week. Still you won't seem to accept that you really really really really don't sound like you have ALS to us.

I am sure you are a very nice person and I hope you get the help you need but please don't don't be surprised if you get some angry responses to this post. Forgive me for feeling protective of our PALS who are so helpful and generous, keep in mind, some are typing with great physical difficulty to answer your questions.

I truly hope nothing is seriously wrong with you... mais je peux te rassurer que tes symptômes NE RESSEMBLENT PAS DU TOUT à la SLA.. j'espère que tu comprendras ça un jour. Bonne chance.
 
Hi,

It is not my intention to make you or someone else upset. If my behaviour is upsetting you I apologize. I understand you all are in extremely difficult situations. I know a lot of people here have answered a lot of my questions. I hope you all know I really mean well.

At first I was very scared about the twitches I'm having. I was getting there to accept my BFS diagnose until I saw this dent in my right hand a couple of weeks ago. After reading some posts here of people who where diagnosed with BFS in the beginning and finally ALS my anxiety went high up. Therefore I wanted to show you the hand and see what you think of it (dent is larger than pic shows, I posted the wrong one) I just want to know what's going on with my body.
 

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Alexandre I'm gonna be objective - it might anger some other people. It might cause you to worry more but you asked and here goes...

Do I think you have tried to doctor the photos? No.

Do I see a dent? Yes.

Is it atrophy? I have no idea.

Is it ALS? I have no idea.

Is there even a slight possibility that the dent could be from from ALS? Yes.

Could your dent be from something other than ALS? Most definitely, and more likely since there is no weakness.

That's all that I can say about the pics.
 
For what it is worth, I, too, have dents in my hands when I hold them the way you are in the photo. But I have perfect muscle mass when i do the action your neuro asked you to do - lay them flat. I was just at neuro yesterday for a follow up - he is a neuromuscular specialist and a former head of an ALS clinic - he tested my reflexes and strength...all normal thankfully. I do not have ALS. Have had BFS for 10 years. And as I mentioned, I have the dents you show in your pic when I hold my hands that way - both of them.
 
Let me ask and answer the same questions that KTMJ has:

Do I think you have tried to doctor the photos? Uh . . . no . . . that would just be a sick thing to do.

Do I see a dent? Yes, but it could have always been there and can be due to a lot of things other than muscle atrophy.

Is it atrophy? If it is muscle atrophy, it would have been from something that happened some time ago that subsequently healed, because you don't have any weakness.

Is it ALS? NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO. Why you ask? Because . . . YOU DON'T HAVE ANY WEAKNESS . . . and because . . . YOUR EMG'S HAVE BEEN CLEAN . . . and because YOUR NEURO'S WHO SPECIALIZE IN NEUROMUSCULAR DISEASE HAVE TOLD YOU IT'S NOT ALS.

Is there even a slight possibility that the dent could be from from ALS? NOOOOOOOOOOOOOOOOOOOO . . . see above question and answer.

Could your dent be from something other than ALS? YEEEEEEEEEEEEEEEEEEEEEEES . . . once again, see above question and answer.

YOU . . . DO . . . NOT . . . HAVE . . . ANY . . . WEAKNESS. If your "atrophy" is due to some type of MND, you would have weakness and YOU WOULD HAVE HAD WEAKNESS BEFORE YOU SAW ANY ATROPHY. I am completely baffled as to why you can't understand that.

Alexandre, as I said to you in a previous post: I'm trying to help you as are other people on here but it appears that you have lost all sense of reality and have become completely irrational. There just isn't a thing anyone on this planet can say to you. I truly think you are in need of psychiatric help and I say that with all sincerity.

Once you get better mentally, I'd like for you to stay on this forum and help those people who come on here that just won't listen to reason who clearly don't have ALS. You have convinced yourself you have ALS, so in your mind, you are walking in the shoes of those that truly have this disease (which is a privilege by the way) BUT you are lucky enough that you can step out of those shoes because once again, nothing at all points to you having ALS. When you finally step out of those shoes, don't forget about this disease and do what you can to help the ALS cause. I wish you peace.
 
Alexandre--

Did you read the post I left for you in another thread? I am also someone who has had years of fasciculations and dents in my thumb muscle. I also have weakness, but it is not weakness that is typical of ALS at all. This has been going on for 3 years and I've had 3 mostly clean EMGs (by "mostly" I mean they found very slight problems in my nerve conduction, but NOTHING indicative of ALS.)

Neither one of us knows what's going on in our bodies; it might be BFS, it might be something more significant. But that does NOT mean ALS. It's crazy to think that the spectrum is so black and white that it's either benign or it's ALS. Accept that you may have something weird going on in your body that neither you or your doctors can explain, but you are doing a disservice to your mental and physical health to fill the space left by that question with an incorrect answer. If nothing else, hearing these stories by the very kind people on this board should give you some perspective. As long as you are functioning fine, then you should be grateful that all you have is a freaking dent that you would have never noticed if your mind wasn't so preoccupied with ALS.
 
Here's what I wrote to you on another thread, in case you missed it:

Alexandre-- I totally empathize with you. I have been twitching for 3 years, and after that first year, a huge dent showed up in my thumb muscle (thenar area.) That was after I had a non-stop, 24/7, rapid and rhythmic fasciculation in my first interroseus as well as body wide twitching. My doctor told me my muscle had "wasted." I have very real weakness that becomes particularly obvious after exertion. I have cramps. I have "popcorn in my calves." I understand your fear and your concern.

But honestly, Wright is 100% correct. You cannot resign yourself to an ALS diagnosis just because because you've heard that some people had twitching before weakness. And you can't think that ALS is the ONLY thing that causes twitching + "muscle dents."

In regards to Melody's husband you say "If it can happen to him it can happen to me!" Technically, you are correct. But if 1% of the twitching population had twitches that turned into weakness and an eventual ALS diagnosis, but 99% had twitches that DIDN'T eventually lead to an ALS diagnosis; why would you focus on the 1%?

Am I still concerned about ALS? Of course I am. But I listen to my rationality (and the rationality/wisdom of my doctors) before I give in to the highly irrational emotions of fear and anxiety.
 
Thank you for the answers.

Wright: I'm just thinking I had my emg's done too early - both within 2 months of twitching. I had clinicals that were fine. It's hard to get a new neuro, neuro only what's to do another one if he thinks there is something wrong. But than I read of someone that had diagnosed bfs , they did emg and emg was bad. I'm always thinking maybe mine was done too soon.

Andy: I'm just so scared doctors are wrong. He didn't think this is atrophy , and I'm so convinced this is. weird
 
I would give anything for our doctors to be wrong, to have a clean EMG, to have no weakness, but doctors are not usually wrong. Since the doctor doesnt think anything is wrong, why cant you feel relief and enjoy your life. My husband does have ALS, and we try to enjoy our life. If a year from now you do find out you have ALS, you will regret all this time you have wasted. You are not able to deal with thinking you have this horrible disease, how would you be able to cope if you really did have it? Believe me, be thankful, and get on with your life.
 
I would like to beg the pardon of all of the forum members here that have ALS or some other form of MND while I suggest to Alex that he probably does have ALS.

Why do I say such a thing?

He has dents, for Pete's sake!

His EMG showed nothing quite a while ago but now he has dents! Come on! Can't you good people see that much? Surely that means he probably has ALS!

I don't have ALS, am told it is PLS and don't have dents. My logic - he doesn't have PLS because he has dents. Many of you with ALS have similar dents. I'm voting for ALS for Alex and hope this brings him my comfort, comradeship and consolation.

HE HAS DENTS!
 
So now that it has been concluded he must have ALS. I guess he has about 18 months left to live. My condolences.
 
I have dents, big dents. Weakness too. Real ALS. Had it more than 6 years. Am I worried? Some days but I don't let it consume me. These people really need to get out more.

AL.
 
Dear Alexandre,
You are completely consumed with anxiety!
Lets pretend your doctors are wrong and you do have ALS(which we know you DON"T!); knowing in advance is not going to make that much difference.
Life is short; enjoy it.
One of my family friends, who is a very healthy 45 years old male, suffered a massive heart attack on Monday. He just had an annual Physical exam with all lab work up, which was perfect.
We have to be prepared to unfortunate events in our life, but not constantly dwell on it.
Again, stop wasting your life on consultations with dr.Google, instead try to deal with your anxiety and have a NORMAL life.
Good luck to you,Erica
 
Joel,

Thanks for taking my side in offering moral support to Alex. Surely someone else out there can do likewise!

Joel, 18 months give or take...
 
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