I am already sure this is ALS!!!

ArtZZ

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Joined
Jun 7, 2024
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3
Reason
Learn about ALS
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Country
KO
State
KO
City
Pristina
Hi all

Its like 7 years and a half since having muscle twitches. Have done EMG 3 times. The last one was in last year, neuro performing said definitely not ALS but another one said slightly high amplitudes normal for your age (I am male, 26 years old).

My clinical is brisk tendon reflexes - bilaterally, other stuff is OK as per Neuros.

But since April I am seeing new symptoms. Clumsy hands, more twitches and in new places like calf or the middle of the outter hand, jaw fatigue (this is the most terrible cause interferes with eating, also have some dental issues which could be the case).

I also have constant cracking of joints, rarely pins and nedless in heels.

Since the begining have used and withdrew from time to times from Escitalopram and Alprazolam (Xanax). I think everytime I withdrew I become worse.

MRI of the head is OK, MRI of the cervical spine and thoracal slight scoliosis in the right, physiologic kyphosis and physiologic lordosis. I am doing physiotherapy.

Latest neuro I saw examined only tongue and said that there was no atrophy.
 
Hi there-

You may be sure you have ALS, but you do not actually report the pattern of symptoms that indicates ALS. You are young, you have been cleared by an EMG and clinical exam by neuros (more than once) and you report sensory issue. You also indicate your symptoms are affected by your medications. Please read here to further understand why ALS is not the case for you: Read Before Posting.

You will have to continue working with your doctors to figure out what's going on, but be reassured ALS is not it.
 
Hi moderator,

Thanks for the reply! Yes is true, I have seen more than 20 neuros but this recent symptoms I dont remember experiencing from the past. Jaw fatigue is horrific. I am literally eating something and mouth feels weak. Hands issues - grabbing a pillow definitely doesnt feel easy and like it was 2 months ago.

As per medications I really dont know if withdrawal causes this kind of symptoms. But even they make me feel better I definitely dont want to use.
 
“I am male, 26 years old”

It seems no one wants to address how extremely rare it is for
anyone in their 20s to be diagnosed with ALS – being ALS is
a rare disease itself. Maybe I'm wrong... maybe someone
can show me ALS is no longer considered a rare disease.
Does it now rank with MS, Parkinson Disease, Alzheiemers ?


“I Have done EMG 3 times.” None indicated ALS.

“I have seen more than 20+ neuros.”

(I have not seen anyone here who has been seen by 20+ Neuros !
Apparently the 20+ Neuros over time were not concerned with
you being a serious candidate for ALS.)

You have posted so many symptoms that point away from ALS
and extremely ALS knowledgeable moderators have replied to.

I can’t see what more could be accomplished here going forward
until you get your Health Anxiety seriously under control.
 
20 neuros is ridiculous. If you did have something of concern which it doesn’t sound like you should have picked one of the first 2/3 and let them follow you to see if there were changes. If you have seen 20 neurologists and didn’t find one you trust that speaks to your issues not theirs
 
Hi everyone again!

I know my body very well and in this 7 and a half years of twitching I have never been worse!

In addition to symptoms mentioned in the beginning, I also do think I have split hand phenomenon but as long as its not allowed here, I wont take a picture. Also I have lost weight like 5 kg in a month and its very noticeable in my arms. Also my hands kinda look skinnier!

Another thing that I think I need to mention is that symptoms became worse in April maybe some days after using three antibiotics for a bacterial infection: Ciprofloxacin, Ornizadole and Doxycycline. IDK if its related but I think its better mentioning!

One thing that is characteristic is that I have some kind of dizziness when standing up after sitting in a prolonged period (like in bathroom),

I have also significant lower back pain sometimes when laying in bed and sometimes deep eye pain!
 
It is not our job to argue or convince you. Again you need a pick one doctor to follow you. You presented more non ALS symptoms and yes cipro especially can cause issues. Please no more posting until you have a doctor exam and results from any tests they might order
 
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