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Amyotrophic Lateral Sclerosis (ALS) Community
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Avatar universal

Symptoms keep piling up - desperate for opinions on if ALS

Hello, I am a 34 year old female with the below symptoms - they keep adding on and I am desperately seeking opinions on if this sounds like ALS (or something else) until I can see my neurologist in Feb. Thank you in advance!

Bodywide:
1) Since July 2013:  Twitching all over, all kinds of twitches, with hot spots. No cramping. Clean EMG 10 months after twitching started (EMG was only performed in two places). Clean neuro clinical exams 2 times. At times, twitching has died down for a few weeks. I do not twitch in my tongue, though.

2) Since Dec 2014:  Body jerks/big twitches. Not just before falling asleep, a leg or my abdomen will just randomly move, big area.

Mouth/Throat:
3) Since Oct 2014:  Excess saliva/constantly wiping the corners of my mouth and swallowing. Some days were not so bad as others. GERD meds do not always help. Endoscopy was normal, showed mild Reflux and Gastritis. I am not choking on anything and can swallow ok, but I am swallowing often.

4) Since mid-Dec 2014:  Biting/nipping at tongue. Good and bad days. No slurring issues. I may have Bruxism, tongue is always pressed against the roof of my mouth or teeth.

5) Since mid 2014:  Lump in throat and sometimes food or pills getting stuck - no problem swallowing, but will feel sometimes something sticking further down.

Right Hand:
6) Since Feb 2014:  Bouts of thenar pain, pulsating sensations, twitching, weak grip and acknowledged „shrinkage“ of the muscle between my thumb and index finger, and on my thumb joint itself, by two doctors (one neuro and my primary care). A Ganglion cyst was found and will be removed. It is not clear to the Hand surgeon if the cyst is causing the weakness. Since Feb, I can still use my Hand totally normal except for gripping and that part has waxed and waned.

Left arm and shoulder:
7) Since end of Dec 2014:  Major hot spot twitching in the entire left shoulder and arm, followed by immense pain, as if I had been punched and bruised in several places, and weak/clumsy feeling in whole arm and hand.

Left leg and back:
8) Since Oct 2013:  Left leg pain, twitching, weakness, also in lower back and in butt. Was so bad to the point that I felt like I had to drag my left leg with me. Lumbar MRI showed nothing. With cortisone/lidocaine shots and two times physiotherapy, symptoms always improved, including weakness and gait.

General:  
9) Since- I was a teenager:  Anxiety, panic and psychosomatic disorders (all diagnosed). I will add health anxiety and OCD to the list.



2 Responses
Avatar universal
I'm 27 female... Mom of 4 and I'm petrified I'm dying... I searched ALS and I feel I have a lot of the symptoms.
My whole body twitches even sometimes my tongue gets a weird sensation. I get rid easily. I get hot spots on head. Tingling in hands and feet. The twitching is the biggest scare and the creepy behind in my face. I have no trouble swallowing or with my strength and I walk and talk fine. I have been diagnosed with anxiety, tmj, and fibromyalgia. I'm praying to god it's not ALS. I have a emg scheduled for the 7th and it should give me my answer I been stressing for. I have had holter monitors, ekgs, eeg, cat scans, MRI, blood work... You name it and it's been normal. Either I am losing my mind or I'm sick. I hope I can get my life back. I can't go on like this. I'm always worrying and scared to the point I can't enjoy life.
Avatar universal
I get tired easily** this phone is awful sorry for typos
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