Please help ...is it ALS

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Louie

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Hi my name is Louie I’m from Sydney Australia
I’m 45 yr old with 5 kids. I’ve been following this forum for a year now and envy the the way those dx with this disease deal with it. If I have what i believe I have I’m afraid I will totally lose whatever mind I have.
14 months ago I got fasciculations in my right tricep and within 3 months it was in all 4 limbs
An emg 1 year was clean with no other issues
2 weeks ago I had severe pain in my right elbow joint Now the pain is almost gone but I’ve been left with very visible atrophy around that elbow which my family can easily confirm I do weights and haven’t noticed any weakness
Now I’m certain I have ALS. Neuro next week.
I wanted feedback to see if anyone else has similar progress?
 

lgelb

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Much more likely you have an injury or blood clot. So I see nothing to worry about in re ALS, but the neuro can refer you to a physio or orthopod if needed. I very much doubt the elbow problem connects with your past fasciculations, which, as you have read, mean nothing in themselves.

Best,
Laurie
 

affected

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Really don't see ALS even a tiny bit!
Who are you seeing next week?
 

Louie

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Thanks so much for replying guys... It took me a year to overcome that I had bfs
.Have just ignored twitching even though they are so widespread now
But it’s the sudden atrophy that has me fearing otherwise...I’ve searched all the literature and can’t find any other disease that causes both twitching and atrophy in the exact part of the arm where the twitching is so prevalent.
I’ve got the referral to see a neurologist..it’s going to be a rough time until I get the dx
Plan on taking time off work to deal
This is the only outlet I have share as I’m not telling my family yet
Sorry for the long post
 

lgelb

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Tillie asked you which doc you are seeing in Sydney?
You seem to be jumping to a diagnosis that none of us sees. Again, if you try to connect the twitching, pain and atrophy, it's a fool's errand.
 

Louie

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Hi Tillie
I’m seeing Dr Schwartz at Southern Neurology at Kogarah...He did the emg last year...he could see the fasics but there was no atrophy or weakness then only sporadic twitching in the right tricep area.
I’m only stressing as the atrophy in the elbow is very visible to anyone I ask ...it’s my dominant arm and it hurts exactly where the muscle used to be. I initially thought the bone was sticking out unusually
Sorry guys
 

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Bestfriends14

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I will put in my two cents, as well. I don't see ALS, as none of your symptoms align with the disease. Pain points away from ALS and twitching means squat. Also, atrophy comes AFTER a muscle has died and become useless.You are not describing that in the slightest. You are falling into "unhealthy " territory by obsessing about a disease you so obviously do not have, and diagnosing yourself with ALS when you've already been told you have BFS.

Pictures really mean nothing and for those who have been diagnosed with ALS on this forum, I have yet to see them post any pictures of their body parts. For the most part, those who get an ALS diagnosis are typically sideswipe by the news and had no idea they were going to receive such a devastating diagnosis. There was no obsessing and chasing after it before hand.

Perhaps ask yourself why you are focusing on this particular disease, and asking your doc how you can move forward and let the fear of ALS go, can put you on a path to feeling better.

Best of luck to you.
 

TippiLeigh

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Hi Louie. I’m so sorry you’re afraid. It’s a terrible feeling to be so scared. I was frightened and scared and came here obsessing, looking for answers too before I was diagnosed. What you’ve mentioned so far, especially the pain, doesn’t happen a whole lot with MND. I don’t really feel pain, more like discomfort and I think that’s more due to my weight loss and positions when sitting and not having a lot of strength when I stand. Keep working with your doctors. Hopefully they can get you feeling better ASAP. Hang in there!
 

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Thanks for letting us know which doctor you are seeing.
You are definitely jumping a long distance to go from a dent in the elbow to a terminal disease. Hopefully this general neurologist will help you find the cause.
Honestly it is like someone being convinced they have a brain tumour because they have a headache.

Twitches and dents are not ALS, not by a long shot. I can see you are very scared, but try to keep an open mind and be ready to accept what this doctor tells you. Ask if you don't understand anything as we won't be able to mind-read what might have been meant.

Please let us know the outcome. Neurologists deal with thousands of treatable diseases and you are like to have something that absolutely can be treated.
 

Louie

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Thanks for your support guys. It’s not easy asking you questions given what you’re going through. But unfortunately the appt with my Neuro and ortho is 3 weeks away. My mind is a dangerous place to be in right now.
It didn’t help that my Physio yesterday said I might have tennis elbow but he Confirmed and couldn’t explain the significant atrophy around my right elbow.
I’ve googled my ass off to find anything that includes twitching and atrophy and als is the only thing that comes up. Dr Google isn’t offering any hope that’s why this is all I have right now. It’s a sanctuary. God bless you both
 

Bestfriends14

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I'm so sorry you are so tortured by your own thoughts. However, the way you choose to spend the next three weeks is entirely up to you. You can sit and fret about a disease you do not have (you don't have atrophy because you have not lost the ability to do something and twitching means nothing) and waste time that you will never get back, or you can keep busy, be there for your children, and find ways to occupy your mind. If you are unable to do this, it is always best to seek help for your health anxiety. I'm sorry to say, but this is not the place to seek help for that. You simply do not evidence this disease. Your clean EMG, your clean clinical exams, your non-ALS symptoms, and the opinions of the folks here attest to that. Lift is too short to fall to pieces when you have so much to live for. I hope you realise this. Please report back in three weeks when you get confirmation that you do not have ALS and let us know what the doc says. Until then, keep safe and take good care.
 

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3 weeks isn't long mate - stop googling. Since you are not a doctor, you can find all kinds of results online to google searches, but you have no way to validate what you are finding. Cherry picking those results to make your experience fit is like being on a brain tumour site and arguing with dying people - but I have a headache, it MUST be a tumour.
Spend the next 3 weeks looking after your physical and mental health - go back to your GP if you need help doing that.
We went around all kinds of specialists for many months, yet we lived life to the fullest in between each appointment. You only have today no matter what diagnosis you get, so don't waste it.
 

Louie

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Hi guys it’s been a long wait couple of weeks but today I finally saw the Neuro he did strength test and that looked good...he did note some atrophy on my right elbow but put that said he wasn’t concerned about it and finally did the emg which was weird.
When he put the needle in my tricep where most of the twitching occurs there was just constant scratching sound then suddenly a loud pop...like popcorn? A big wave came up when it popped. I asked what that was and he said nothing to worry about that it just picked up a twitch...what does that mean?
He seemed like he was in a hurry and just said no you don’t have als and when I asked what else could I have he just said he didn’t know but it wasn’t that
I walked out more confused than before
I’m still in limbo
Can anyone shine a light on what just happened...is a loud popping sound with big wave good or bad?
Please help
 

Nikki J

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Congratulations your doctor said no ALS based on your emg and his exams. That is the important takeaway here.

your symptoms never sounded like ALS to us and now you have confirmation. Emgs are noisy and it is not possible for you or us to interpret their sounds. The doctor told you it was a muscle twitch and nothing to worry about. Believe him.

if you have been cleared by neurology then go back to your gp and ask what is next. Maybe orthopedics?

good luck
 
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