All test done neuro dont know

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Frederick

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Hi, i look at this site for a few month, now i need some help please.

6 month ago a saw some twitch in my calfs and feet. The twitch are non stop 24/7 since july. I got at least 5 to 10 twicth per second. A lot. I also have some mild atrophy in my left thenar. Twitch are non stop in both feet and both calfs, sometime have a few elsemwhere.

I have also some hard time text on my phone whit my thumb since june, not that worse since, my other thumb start to be the same last month.

i did a EMG clean whit one fasciculation : September
I did a blood test nothing special about that : September
MRI not much about that : November
I saw two neuro, one he can tell for now
The other one , dont know to, he refer me to a another one for a another EMG.


I try to stay calm and dont thing to much about that but i start to freaking out, iam 40 have 2 young kid and nobody exclude ALS so far. My left leg feel weak in october and november everyday but stop 3 week ago.


My question is what you think about my case, is it a slow ALS progession, i know the odds to get als at 40 but d ont look that much like BFS.


Thank you for your awser
 

GregK

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Twitching means absolutely nothing. Nada. Zero. Zilch. The only people who don't twitch are dead people.
As to 'feeling weak', I'm 90% paralyzed and have never felt weak.

If that's all you have, you've no need to be here.

A clean EMG means no ALS.

Did a doctor confirm the atrophy or is that your opinion?
 

lgelb

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Weakness in ALS doesn't emerge for a couple of months and then stop.

Are you sure the doctors still believe ALS is a possibility, or are they following your lead? You are obviously anxious. But I don't see any reason for you to fear that.

Best,
Laurie
 

Frederick

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Hi, thanks you very much To take time To anwser me.

About the atrophy, the doc confirm à Mike atrophy of the left thenar, the neuro are very much concern about my twicht in the arch of my foot, but see the smaller muscle at the base je the thumb and the firts dorsal intersosseux. I read a lot about that and i wonder if it is the beginning of the splithand syndrome. I have hard time but i can for now, texting whit my left thumb, but six month going and its no doing better.

About the twicht, i now most of it its benign but it its normal To have very fine and fast twich day and nigth for 6 month? I have at least 70 Millions twicth since july, its a lot, since then i take B12, magnésium and à good hydratation but still. All my blood test fine except ALT à little above normal.

Last thing, a when i ask my neuro le we can exclude ALS whit my clean emg, he anwers me : your emg is not 100% clean, that why de fallow up.

Any red flag for you ?

Thanks Again !
 

KarenNWendyn

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You said your EMG was clean except for one fasciculation. That sounds pretty clean to me. It would be most helpful if you could post the actual EMG results and conclusions. If it’s in French, we can still figure it out.

Your history is not particularly worrisome for ALS.

Sometimes doctors schedule a follow up visit to be 100% sure, to minimize their liability, and to see if anything else turns up. It doesn’t necessarily mean the doctor suspects ALS and just isn’t telling you.
 

Frederick

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Good thanks for your anwser.

But annyone can explain To me this.

In ALS it took around 1 years or more To get à diagnostique. Everybody here say the same thing about peaple wondering if they have ALS. No weaknest no als, every body twitch etc etc and they always say the muscle in als d ont work anymore there à lost of connexion between the brain and the muscle because the neurone die. I read a lot of story that the symptome is the personn fall or drop thing. So if you fall is because the connexion is lost, so à EMG and a average neuro can flag the als rigth away. Because i read also à EMG cant not be done To early, So...finaly why it take à years or more, it its because the first symtome of à majority of people is more insidious, like twitching, slith muscle wasting, mild ayrophy and so on. Thats the things à really Try To understand. I got all the test ,became mostly normal i still twitch 24/7 for 6 month now,little wasting of the thenar but no clinical weaknes...so far..is it suppose To suddenly appears ?? My neuro sent me To a muscular neuro specialist for a other EMG in a few weak. Is it normal To get wasting and twitching all test fine for 6 month and have als kick in later ? Iam 40 no als relative, so i know the odds To get als start whit twitch. But it happen. So, every person here experience à brutal muscle weaknes as the first symptom ??
 

Nikki J

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Because most people do not rush to a neurologist at the first little symptom. They wait, then go see their pcp who might order a xray or pt and then follow up. Then maybe an ortho or other specialist, then maybe a general neuro before eventually going to see a neuromuscular doctor. There are waits for all appointments and it generally adds up to 6-12 months.

Occasionally someone will have worrisome findings that do not meet the full diagnostic criteria and need follow up but nothing like your case.

There is discussion amongst neuromuscular specialists of the best way to speed the pcp to neuromuscular specialist time. They hope to find an early blood or urine biomarker that, in conjunction with guidelines of who to test, would allow pcps to triage efficiently
 

affected

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Frederick the most important point in answering you is that while it can take 6 -12 months as Nikki says for a definite diagnosis - that is NOT because EMG and clinical tests were clear and then suddenly ALS appears on test results. The people who take a long time to diagnosis always have test results and clinical exams that show there is a progressive brain and nerve disease process happening.

It is, as Nikki says, because many other test and investigations are done, and there is often months waiting for first appointments on referral, it can take a lot of time.

I hope that clears up for you that the time it can take is NOT because you start with clean exams and tests.
 

Frederick

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Good, thanks a lot for your precious time.

I saw my doc firts in july 27, emg 5 september the neuro whit complet blood test octobre firts, mri november 17 and neuro whit all test done december 5. And he refer me To a neuromuscular specialist for a second EMG in january . Do i iam lucky about the timeline or
Its maybe time To take it really seriously ?
 

Bestfriends14

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Honestly, after this next appointment it is time to let the thought of ALS go. You have yet to post a single thing that would indicate ALS. I hope after this next appointment you'll be able to move on. It's an awful lot of time to spend on a disease that you do not evidence.

Best of luck to you.
 
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