Full body ALS symptoms. Educated opinions appreciated!

[Atate651]

(thread closed user banned for multi-id)

FIrst off, I am no expert. Im not diagnosed with ALS. I am however a 32 year old that has been experiencing very strange progressive symptoms for 6 months now .
I research on the internet which is sometimes helpful... Its also sometimes confusing which is why I'm here. 6 months ago I had widespread twitching begin. The twitching is still present. Two months ago both of my calves became extremely stiff. My right forearm also became extremely stiff. I have a feeling of fatigue in my thighs and in my right arm. Theses feelings and stiffness are unrelenting and I believe are slowly but surely becoming worse. The twitching is now primarily only in my calves and right arm.

I received an emg a little over a month ago of my entire right leg, my right arm, right hand, and my tongue and the EMG was CLEAR! amazing! I was very grateful. However the symptoms maintained & spread. So an additional emg was performed a few days ago (by a different neurologist ) in my left leg along with my right arm...the EMG was CLEAR! Yes, I am grateful. I have also has a CK (creatine test) normal. MRI normal. There has been no weakness detected in the physical neurological exams performed by the doctor.

so why the hell are you here guy?

I am making this thread because I know there are experts here in addition to people that are unfortunately living with ALS, or have a loved one with ALS. I know that there are VERY knowledgable people here. This has dominated my life, and on a few occasions I've gotten close to taking my life over the symptoms that have dominated my body and made it a prison. I feel the neurologists write off what I'm saying because I'm young. They tell me I have Somatic Symptom disorder.

I have these consuming symptoms and there's no answers. All I know that the symptoms I listed in addition to the constant twitching clearly make me afraid of ALS. I want to ask about the reliability of the EMG for the symptoms ive mentioned? Do EMGS only detect ALS when there's is weakness? Will it detect my symptoms like stiffness and the feeling of fatigue? In short I am searching for answers on if the EMG tests I had have the ability to miss things. Im trying to determine if I need to have another EMG performed in the future.

Ive asked these things of my Drs. too. However, with your back against the wall - it definitely helps to have more opinions.

Thanks for your time & I hope you guys stay up the best you can!

Andre

 

[lgelb]

What you have said does indeed accord with somatic symptoms. We all have real stiffness, twitching, and fatigue from time to time, but your mind can magnify it, prolong it, intensify it. So there is an answer, supported by testing and exams. It's just not the answer you have arrived at.

The EMG detects nerve damage such as ALS causes whatever your symptoms. It does not detect symptoms. It detects nerve and muscle problems. Evidently, you have neither, and have not presented any reason to have a third EMG or to worry further about ALS.

You have, however, presented good reason to seek counseling for health anxiety, lest these fears take over your life, affecting not only your health and happiness, but that of those around you. Your body is not a prison unless you close the door and lock it yourself.

Best,
Laurie

 

[affected]

Twitching without failure means nothing, and that is the total of it.
Please read this carefully as it is our official position and we are not going to debate it with you I'm sorry, it won't help you or anyone.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

Please do work with doctors to help you work on what is next. Discussing it as much as you can is not helpful it is part of your problem I suspect. All the very best

 

[Atate651]

Thanks for your response! As I stated prior , its a lot more than twitching. My legs are so stiff it affects my walking. My forearm is so stiff changes how I grab things. My limbs are constantly fatigued. Ive also had the two emgs tho. If it was a matter of the twitching alone, I certainly would not be on this forum.

Thank you again for reading and responding to my question!

All the best to you too!

Andre

 

[Bestfriends14]

Twitching aside, ALS doesn't start with stiffness all over the body. Limbs aren't tired, legs aren't stiff, and one doesn't have two clean EMGs and, what I assume, multiple clean clinical exams. ALS is about function failure, not feeling like you can't do something but you really can.
Therefore, no ALS. I hope that helps make it clear. Try a stretching regime and a clean diet and hopefully that should help.

Good luck to you and take good care.

 

[affected]

I said twitching without weakness, you don't describe any doctor diagnosing clinical weakness - stiffness is not weakness.
You can been cleared, please work towards health with your doctors and I truly hope you find this.
These are the best educated opinions you will receive.