Doctor suspects ALS!

[ally]

Hello i came here few months ago...Iam a female and i am 22.
After the first neuro diagnosed me with radiculopathies the second neuro doctor suspects that i might have ALS!
I have done a lot of testing plus an emg of rigth hand and leg where the first neurologist said i had radiculopathies...But the widespread fasciculations ,the atrophy and the fasciculations in the left hand made the other neurologist suspect of ALS. I hadnt told the other Neurologist about the fasciculations being widespread i didnt think i mattered nor had i showed him my left hand...
But still how can the place where there is atrophy to fasciculate without it been ALS?Also i have face fasciculations ..The doctor said she didnt notice any tongue fasciculation then but when i told her about the strange feeling in tongue she told me when i feel them i should grab a mirror and look at my tongue to notice any movement.....
She seemed very stressed and worried which made me worried too.She said we must do this as asap but after she is back from her trip...
Thank you for reading this

 

[limegreenphysicist]

Hey Ally I commented on your other thread but there are a huge list of things it could be other than ALS including radiculopathy. My heart is with you but just know it can be so many other things and at your age more than likely is. If you need me I'm here Let your Emg tell the story.

 

[alex scared]

hi ally . . Try and focus on the positives and not worry . . The odds are still against you having als . . Obviously have something going on but as limegreen has said your symptoms could be a massive amount of things before als . . I know its worryin time but hang in there . . God bless alex

 

[TedH5]

Ally, I am sorry that you are going through this. When are you having an EMG done? That will be very telling as to whether or not you have ALS. I hope you don't but either way you are in my thoughts and prayers.

 

[ally]

Thank you all so much...Its really hard you know until i truly understand whats happening...I'd hate to be right...The emg will be in 10 days or something ...I dont know what to think....i just pray...and thank you all for your kind words i really need them....

 

[wright]

I'm finding the care you're getting, the opinions of the neurologists and your story in general, a bit odd.

You don't "show" a neurologist anything . . . they should look at everything without you showing them.

A neurologist tells you to hurriedly look in the mirror for fasiculations if you think you feel them? Then what? I have never heard of such a thing. Did she ask you to video record them, too? Furthermore, fasiculations are not used as a criterion to diagnose ALS.

You have muscle atrophy in the absence of weakness and the neurologist still thinks it's ALS? Weakness precedes muscle atrophy, so that makes no sense.

A neurologist tells you that she suspects ALS and then goes on a trip . . . without referring you to someone else? What the hell kind of bedside manner is that?

It sure sounds like a bunch of quacks to me if I'm getting this story straight. Please don't jump to any conclusions as the people who are supposed to be caring for you have. Your first EMG pointed towards radiculopathy, so please hang onto that. In the meantime, try to see a specialist (I'm going to assume this latest neuro is a general neuro) to get better care.

 

[ally]

Well yes...Indeed thats what happened...She told me to obtain the first EMG for reference and evaluation...Well she did tell me to call her when she is back...
yes she to told me to go look at a mirror with my tongue rested and see if the tongue is moving or twitching at the time where im feeling this things(tingles,buzzing) and well it does but i dont know what to make of it.....Im thinking of trying another neuro...But i dont know where that will get me....Will they still ask for the first EMG before letting me have another?Im really confused as im doing this alone and i pretty much dont know what to do..She told me she needs to see what muscles where affected in the emg etc...i wasnt listening most of the time becs i was kind of shocked....I dont blame her.Maybe thats the way you get to tell patients...to prepare them...Maybe she is just right despite the fact that she propably shouldnt have said anything...Dont know what to think...
thank you all!
P.S:i have no idea what kind of neuro she is..I know that she is an MD though..Yes the first i think was more qualified but she said if i didnt show him my arm and explained what i told her then he wouldnt know and from the emg just to be lead to believe it was radiculopathy something like that i dont know
So even if the first neuro was a neuromuscular specialist because i was stupid enough not to mention anything about my hand he might have misdiagnosed me and its all my fault...

 

[limegreenphysicist]

Well actually if he diagnosed you with radiculopathy he would suspect that it will cause atrophy and fascics bc it does. He wouldnt have to be shown. Bc he is a neuromuscular specialists he sees it on a daily basis. My ALS doctor said I didn't have to repeat my EMG if I didn't want to bc she KNEW that she would eventually see positive sharp waves eventually. Tis the process of denervation. So a neuromuscular specialist will not miss anything just because you didnt tell him. Your EMG told the story the rest is just adjectives if you know what I mean. Theres no way on Gods green earth I would see a general MD or a neurologist as a follow up to a neuromuscular physician. Generals are tards if its not MS. If I was a NM specialist I would take that as a slap in the face for all my 7 more years of specialized research and training as opposed to a general setting up shop after 4 years med school and only 2 to 3 concentration.

Girl if youre getting a second opinion go to Mayo bc as you wrote your first neuro was a specialist at a teaching hospital correct?

 

[ally]

Hello i would like to ask if tapping induces fasciculations does it mean als?because theres this area below the thumb ( not in the atrophied area near the end of the thumb ) that when i tap it there fascisulations.......The doctor didnt tap there just above it in the part that looks atrophied but saw no fasciculations but everytime i tap that area in both hands but mostly in left with the atrophy theres fasciculations

So please anyone who knows please answer me....
Thank you

 

[limegreenphysicist]

Fascics are non diagnostic of anything. It is not even included in the diagnostic criteria. All that matters is the type of abnormalities on an EMG, clinical weakness, and all the other tests coming back normal to rule out everything else. Dont worry about fascics, I don't even notice mine anymore. I can see em. I just call them my little circus in my back and elbows. Tapping has nothing to do with whether you have ALS. They tap mine and they sometimes go crazy sometimes not and I dont have ALS. Hope this helps

 

[ally]

really you have fascics also when they tap you?because my doctor says if they move it means als..maybe yours are different?...i dont know
i know an emg will show for sure but really arent these clinical signs?/Induced fasciculations?bening dont just come by tapping do they?

 

[limegreenphysicist]

Your doctor is a quack then. I can slap my husbands shoulder and it goes crazy lol. You need to run to a neuromuscular specialist. Fascics show up on EMG as well. Most ALS patients dont even feel theres much. Its that last thing they worry with. What do you think exercise induced fascics are? They are a response. Thumped fascics, smacked fascics, arm bar fascics, rear naked choke fascics are all the same.

Girl when I saw my ALS doc she tapped me silly and they went crazy all over wherever she went lol. I'm telling you and I will put this on my grandfathers grave. Fascics are non diagnostic. Tons of peeps have it. If you would go over to the BFS site they have tongue twitches as well. Have you been there?

Benign fascics are actually more likely to be overactive than pathological fascics and even pathological fascics found on EMG with the presence of abnormalities doesnt mean ALS. I'm living proof babe.

Like I said mine are my circus and sometimes a good massage

 

[rose]

I agree that you need to find another more qualified doctor. What she has said to you makes no sense, (look in the mirror at your tongue next time you feel them? come on, that's just quackery what kind of doctor says that? ... and if you see the twitches, what then? ) What she has said does not line up with what I know to be true. Go (RUN) to another neurologist! good luck to you.

 

[ally]

today i did felt some sensations in tongue and waht i saw where certainly fasciculations.There was this strong vibrating feeling on one side of the tongue and when i opened my mouth that spot twitched up and down...I sees that it is ALS....I m so scared..Im just 22.....Im certain that this is it....I hope that god up there helps me...i dont know what to do im in a miserable stage....I cant live like this anymore......
Sorry for the rantings i know most of you here have their own issues......
i cry all the time ...i dont wanna get out of bed....i wanna sleep and sleep......I see now that i was in denial...I just have to...everything so surreal...Like im dreaming....
i just want to close my eyes....im scared

 

[LizT]

Ally- Im sorry you are going through all of this, but im not going to sugar coat this.
Please DO NOT self-diagnose yourself. It leads to so many problems. You need to do what the others have suggested and seek better medical support. Just because you are so sure its ALS doesnt mean it is. You are only 22. That is a HUGE thing thats in your favor. Yes, it happens a handful of times, but this is a very rare disease, and for it to strike you at 22 is even more rare. I cant throw out numbers, as i dont know them, but if you need to see numbers, someone will post them.
If there truly is an issue (not even necessarily ALS) then you freaking out about it isnt going to help. In fact, in many cases, it makes symptoms worse. The mind is very powerful.
Im not saying i think this is all in your head, but you need to stop and take a few steps back and just relax for a bit. and breathe.
find a specialist and go get an EMG. And then, listen. The best thing you can do, no matter what the outcome will be, is to always try to stay calm and think rationally. Dont let yourself get too out of control emotionally. Not at this stage. Not when you dont even know if there is anything wrong at all.