All Symptoms Point to Als, would appriciate feedback thanks

[armin]

Hello there, first off thanks for anyone reading this it is much appriciated. i am a 20y old male and have been going through the worst time of my life for the last 8 month and was hopeing for any kind of help on my way. i dont no when it all hit me but i started noticing mild weakness in my calf muscles and then after a while i started noticing muscle atrophy at different parts of my body mostly in the arms and legs but my first thought was that it was because i hadnt been to the gym in a while. then the muscle twitching started first in the legs then gradually all over my body, i also latley have been really stiff and there is no sign of it getting any better my weakness now is effecting my walking and now have to stay in all day, the muscle atrophy is so bad now it has spread through my hole body and are able to see and here every bone click and grind through out my body. another symptom i have is that my tounge is scalloped and my jaw is getting weaker as there is no muscle left in my face. i am absolutly terrorfied and feel 100% sure i have als.

i have been to see a neurologist and his first thought when he looked and me was that he could notice the muscle atrophy straight away and seen the Fasciculations in my legs so he ordered me an EMG and Nerve test, i had that done and it came back normal i am very surprised it came back normal.

any thoughts from anyone would be greatly appriciated thanks alot for taking the time to read!

 

[MHJ1]

Hello there, first off thanks for anyone reading this it is much appriciated. i am a 20y old male and have been going through the worst time of my life for the last 8 month and was hopeing for any kind of help on my way. i dont no when it all hit me but i started noticing mild weakness in my calf muscles and then after a while i started noticing muscle atrophy at different parts of my body mostly in the arms and legs but my first thought was that it was because i hadnt been to the gym in a while. then the muscle twitching started first in the legs then gradually all over my body, i also latley have been really stiff and there is no sign of it getting any better my weakness now is effecting my walking and now have to stay in all day, the muscle atrophy is so bad now it has spread through my hole body and are able to see and here every bone click and grind through out my body. another symptom i have is that my tounge is scalloped and my jaw is getting weaker as there is no muscle left in my face. i am absolutly terrorfied and feel 100% sure i have als.

i have been to see a neurologist and his first thought when he looked and me was that he could notice the muscle atrophy straight away and seen the Fasciculations in my legs so he ordered me an EMG and Nerve test, i had that done and it came back normal i am very surprised it came back normal.

any thoughts from anyone would be greatly appriciated thanks alot for taking the time to read!

Hi Armin

Sorry about your troubles.

I´m experiencing many of your symptoms my self (Bodywide fasciculations, weak facial muscles, clicking joints etc.) but 2 EMG´s 7 month ago didn´t give me a diagnosed in spite of the obvious fasciculations. Considering your age and EMG it´s most unlikely that you have ALS but there are really a lot of other conditions that can cause similar symptoms.

Cronical Lyme (not easy to detect), Isaacs Syndrome and a lot of polymyosities etc.

Take care and good luck to you and please keep contact to this forum.

Best wishes
Mads

 

[trfogey]

If your EMG was normal, then you do not have ALS. The atrophy and weakness presented in ALS are caused by denervation of the muscles, which is detected by the EMG. Clean EMG, no ALS -- short and sweet.

You should direct further questions about your condition to your doctor, not to Google and certainly not to a group of unqualified strangers on the Internet. You will save yourself a lot of anxiety if you stop trying to diagnose yourself.

 

[armin]

thanks for the reply i wish it was that easy to think of the other possibilities that you stated but its not i litually have every symptom that als causes and is still progressing now! i am 20years of age and cant walk in a straight line because of the muscle atrophy and weekness in the legs and find it a little difficult to type because my hands are starting to look like a claws as the fingers are so stiff, i cant find any other explanation for the weakness i have in my jaw and the atrophy of my tounge the only thing that is ok was the EMG but i fear that will change with the next one.

 

[halfin]

Given your muscle weakness and atrophy, if you had ALS it would have shown on the EMG. After all, why does ALS cause muscle weakness? It damages the nerves that connect to the muscles. Well, this is what the EMG is testing for. Since you had a clean EMG it means your nerve to muscle connections are OK, therefore ALS is not causing your muscle weakness. Now you still might have a serious condition, there are many kinds of problems that can cause these problems. So if you need something to worry about, you can look into those. But don't waste your time worrying about ALS, it really doesn't fit in your case.

 

[BethU]

wish it was that easy to think of the other possibilities that you stated but its not i litually have every symptom that als causes

Armin, the reason it's not easy for you to think of any other possibilities is because you are not trained medically, and have no knowledge of the subject other than what you have gleaned from Google obsessing about ALS.

And you "literally" do NOT have every symptom that ALS causes ... in fact, the grab bag of symptoms you present do not relate to ALS onset at all. If there was anything wrong with your tongue (almost everybody has "scallops" on their tongue from their teeth), your speech would show it instantly.

Sounds like the "worst time in your life" concerns something other than your symptoms, and is probably causing the anxiety that is driving all this. Please talk to your doctor about your obsession and your fears. Once you get those under control, both the doctor and you will be better able to determine what, if anything, is wrong physically.

 

[Al]

Armin. Get a grip on yourself. ALL the symptoms of ALS don't show up at once. Especially in someone your age. You need to stay away from medical sites. If there really is something physically wrong, the doctors should find it. Not us.

AL.

 

[armin]

i do appriciate all feedback that has been giving to me i thank all of you with the bottom of my heart but just to point out the this didnt all just start at once it was the weekness in my legs that started and have gradually got worse over the last 8 months to this point now i have minimal muscle mass in my legs and feet and now i am unable to walk fair so i see that as progressive! i have stillness in my feet and in my fingers and are gradually getting worse too also i have hyperflexible reflexes in all joint that the neurologist tested, i fing it hard to lift my arms over my head somthimes as they are so weak. this definatly has been progression in weekness and in atrophy and i also have non stop Fasciculations thoughout.

my question is that how come an EMG can be normal when even the nuero thought that all my symtoms pointed towards a posible motor condition?

 

[trfogey]

Armin,

There are disorders other than ALS that can cause all the symptoms that you are having. You don't know about these conditions because you are not medically trained and your Google research is hopelessly incomplete. Your doctors know about these conditions, however, and that is why they are continuing to examine and test you. A normal EMG simply serves to eliminate certain disorders from the list of disorders you might have. ALS is one of the possibilities that was eliminated by that test. You should be happy about that.

At this point, though you claim to have all the symptoms of ALS, your EMG results contradict your claims. You apparently have some medical condition that needs attention from your doctors. The best thing you can do for yourself is to let your doctors do what they need to do and stop trying to outguess them.

Good luck.

 

[planningguy]

Armin,

I think I'm only going to end up repeating what others have said, but here goes...

"how come an EMG can be normal when even the nuero thought that all my symtoms pointed towards a posible motor condition?"

Assuming you had a thorough EMG performed by a trained specialist, your EMG came back normal because your symptoms are being caused by something else. There are neuropathies, post viral reactions, adult onset genetic conditions and a number of other things that could cause what you are experiencing.

From experience, prematurely casting yourself into the sea of despair often just winds up leaving you all wet. There's something going on, but take a deep breath, and work with your doctors to find an answer.

Visits with specialists with more expertise in neuromuscular disorders might provide more insight. There are some circumstances that a general neurologist wouldn't bump into in all their years of practice.

Best of luck,

Robert

 

[rom623]

Armin,
You sound like what has attacked me in some respects. I was totally convinced it was ALS and actually argued with doctors! But really the more I read here the more I realized that things are actually different in the details than what ALS patients describe.

I am starting to look at metabolic or mitochondrial disorders (Google "Mito"). Mito can cause fasciculations, and it causes progressive weakness/wasting. I also experienced muscle stillness starting in fingers and legs. Makes sense, that stillness = muscles not having enough energy. Also, sometimes a different area will feel weak and later feel OK. This too makes sense in that wherever the bad mitochondria proliferate before the body adjusts, there will be temporary weakness (although recovery is never to the same point).

What really got me thinking: I skipped a couple of meals the other day, and felt literally twice as weak, far beyond anything reasonable. If I don't eat, I might get a shaky-something-is-really-wrong feeling. That would be an easy self-test for you to try, just to see how your body reacts.

I will bet though, like many of us, you will start out saying it has to be ALS, and later will be wondering what it really is. Mito appears to have a whole different (and rare) set of doctors, which might be why it is hard to get traction with it.


If you do think this might be the case, there are a lot of supplements that you can take - CoQ10, ALA, L-Carnitine, Acetyl-L-Carnitine, a few others. I quit taking them for a few days, and the stillness returned with a vengeance. Another clue. Hope any of this helps.

 

[GlenBrittle]

Armin,

You need to be careful about consulting Dr Google. There is so much out there that you can fall into the "I read it so I must have it" trap.

The proper Dr for that job is a neurologist that specializees for your symptoms.

Glen

 

[MossRose]

I keep reading that if you have a clean EMG you do not have ALS. I have also seen so many posts of having an EMG done too early so my question to all of you who have been diagnosed with ALS how soon is too soon to have an EMG done. I started with tiredness in my legs, then twitching and had an EMG and Nerve test done two months after it started at the Mayo Clinic - in your opinion would this have been too soon?

 

[BrianD]

MossRose... "Too soon" has somewhat relative answer I think.

With ALS, since the symptoms are caused by the denervation to the muscle, any muscle that is showing ALS symptoms will most definitely show up on the EMG if it's caused by ALS. So it's never "too soon" to test a muscle that is showing some problems.

The flip side is it is possible to test a muscle that isn't showing symptoms "too soon" just because perhaps there hasn't been any denervation in that muscle yet.

So relative to your example... you say your symptoms are starting in your legs. So if it was ALS causing it, an EMG would be abnormal in your legs. However, it's possible that an EMG of your arms comes back normal still, because it's possible denervation hasn't occurred there.

The Mayo Clinic would know what they are talking about... so I would trust the doctors there!

 

[MossRose]

BrainD - Thanks so much for your response. I think Mayo is a great facility too and trying to trust them but just had to followup.