27yo Female. I genuinely think I have ALS. Undeniable symptoms and I don't want to face it.

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New member
Aug 1, 2019
Hello, I need some help. This is long and I am sorry but I would so appreciate input.

I am a 27 year old female and I believe I have been experiencing ALS-type symptoms since late 2011 which recently began getting very bad- very fast.

2011 is when I started twitching, gained a tremor in my right hand, and noticed weakness in my right arm- it was so pronounced that my dominant arm didn't seem dominant anymore and my left hand/ arm was stronger than my right. I was seen by a neurologist who noted hyperreflexia in both knees and an otherwise normal neuro exam- from what I can remember.

We did an EMG of the right arm only just in case- and it came out clean.

I spent a few years after that being skeptical and scared. I noticed atrophy on the muscles on the right side of my spine-left side was still strong. The atrophy remains to this day. I noticed a reflexy feeling on right side of back activating at random times- but I think that has been occurring since childhood. I honestly can't remember what it is like to feel "normal."

After a few years of being absolutely shattered, and walking around thinking I had ALS, I told myself that if I had it, it would have progressed to the point that I would not be walking. I tried my best to push my fear to the side but it remained in the back of my mind as I experienced small symptoms of weakness and continued twitching. I tried to live normally despite my symptoms.

In 2016 I began developing issues with my speech - slight - I avoided and still avoid certain words because my tongue just can't do that anymore. I followed up with a general neurologist who noted the hyperreflexia and said my neuro exam was otherwise normal. I don't remember the plan at that time but no EMG was ordered.

All my symptoms have never left me and in January 2019 things hit the fan. Little things I was ignoring hit me full force. Additionally, I began experiencing INTENSE dizziness and was eventually, 3 weeks ago, diagnosed with dysautonomia.

January also brought on crushing L sided weakness. I am struggling to type with my left hand, my left knee is so messed up its causing balance issues (does not hurt). I keep forgetting about my knee problem, get up to walk and stumble. My upper eyelid twitched for a month straight and then lost strength. It feels like my eyelashes are literally weighing my left eye down. I began having swallowing difficulties, CHIN weakness and atrophy, and it feels like someone is constantly choking me. My chin feels lose and weak. My tongue is scalloped.

After being diagnosed with autonomic dysfunction I followed up with neurology. Hyperreflexia in all reflexes still noted. Hyperreflexia strong in the knees. No babinksi, no hoffman, can still walk on toes and heels, passed the really general strength tests. I think one neuro noted clonus. Another neuro I saw said my reflexes were normal (they are not) and that no clonus was noted.

All blood tests came back normal but CK levels- 415. yikes. Had lifted some weights in the says before for the first time in months so hopeful its just that.

I had an EMG. I do not have the official report yet. I told the neuro doing the EMG about my ALS concerns and she told me she would be able to tell from the EMG- she would be able to let me know during the test.

She tested my left side only. Just my arm, muscle by my thumb, leg, and one in my foot. It did not seem like many pokes at all or many muscles.

She did not test my throat/ chin area which has been causing MAJOR issues lately. Or my eyelid which is really messed up now.

Like I said, I do not have the report yet, but she told me on the spot that the EMG looked good and there were absolutely no signs on MND.

I was shocked beyond all belief. I am deteriorating so fast and strong that I thought the EMG would 100% be dirty. I read that dysautonomia is most often caused my denervation and with all these symptoms AND dysautonomia it seemed insane that no denervation would be detected. I'm usually twitching all the time- but the twitching stopped during the test and I don't think they were able to catch the twitching. Would this still make for an accurate EMG?

I have listed a summary of my symptoms below w/ a general timeline:

2011: Twitching; weakness in R hand/ arm; hypperreflexia knees
2011: EMG Right hand & arm normal

2012: Noticed atrophy in muscles on R side of spine- super reflexy feeling in R side of back

2013-2014: Crashing fatigue, generally not feeling well; finally got over ALS fear after 3 years of it being in my mind

2014-2016: Things relatively normal but still twitching all over everyday.

2016: Followed up w/ neurology. Hyperreflexia noted; otherwise normal neuro tests; no EMG ordered.

January 2019: Extreme dizziness & strong L sided weakness. Thought I was having strokes and went to the ER multiple times.

Feb-March 2019: L sided weakness getting bad. Felt like I have carpal tunnel but I do not- never got better. Off feeling in left knee began- never subsided.

March 2019- July 2019: Growing weakness on L side- hand, bicep, foot, knee. Hard time typing with L hand. Eye twitched from March- April then got WEAK. It feels off everytime I move my L eye. L arm muscles feel tickly - not tingly- like a weak tickle in the muscle. Having foot cramps and hand cramps.

July 2019: Dx w/ dysautonomia (which can be caused by denervation). Can't drive, walking like I am drunk.

A few days ago I had an EMG- official report not released yet. Told neuro doing exam that I was concerned about ALS. She said she would look out for the signs. After the exam she said she saw absolutely no signs on als.

With my symptoms and this crushing weakness it is hard to believe. I mean, I have weakness in my EYELID and my CHIN along with everything else.

Don't know what to believe or where to turn from here. I can't really use my left hand and the muscle near my left thumb looks like a deflated balloon.

Why in the world would the EMG be normal with all this going on.

I've done all other testing: MRI head, neck, spine; all blood tests for muscle issues, autoimmune, vitamins everything- all normal but CK.

Don't get it. EMG should have shown something, correct?
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