34 y/o male, UMN and EMG too soon?

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THouse85

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Hi, I am a 34 year old male who has been exhibiting some worrisome symptoms over the past month


About two months ago, I had this transient feeling of dysphagia with solid foods that would come and go, but didn’t think much about it, and didn’t seem to progressively get worse.



About one month ago when signing the date (June 1st), I felt some difficulty articulating my fingers on my right hand. It was transient, I had just started playing the piano, and attributed it to that and didn’t think about it much.



About three weeks ago, I started noticing transient episodes of shortness of breath, that I first attributed to allergies, but seemed to come and go and didn’t seem to get worse dependent on the situation/exertion.



Fast forward to about two and a half weeks ago, I was having more trouble with my right hand and arm. I could describe it as stiffness, and just difficulty maneuvering my hand around the way I wanted to appropriately. The next day I noticed some stiffness (spasticity?) in my right foot and leg as well. It was intermittent, but this prompted me to make an appointment with the neurologist. Upon waiting for that appointment, I notice I had fasciculations all over my body and now cramping on the lateral aspect of my left foot.



The neurologist did an exam and was unimpressed. I had brisk reflexes all around, but no clinical evidence of weakness/atrophy. He scheduled me for a lumbar MRI, and EMG (at the end of July), and a CPK.



Two days later, the spasticity in my hand arm became more frequent and I started noticing what I assume to be bulbar symptoms. Spasticity of my vocal cords to water/spit in my mouth, difficulty articulating words, and eventually, difficulty swallowing solids. I noticed fasciculations on the right side of my tongue. I couldn’t eat for a few days (that was likely related to stress as well) but would have episodes of relief from these symptoms that would allow me to swallow. I hear some raspiness to my voice. The next few days were torture. Unable to sleep, shortness of breath in bed, GERD (never had before), severe hypnic jerks, biting my cheek etc. Also started having cramping of my facial muscles and right sided paraspinals and abdominal muscles. Lying in bed on my phone I was feeling many of these cramping muscles just give out on me.



I have a few connections so I was able to contact a neuromuscular specialist that fit me in for an appointment and EMG because of “concerns I had ALS”. This Tuesday (about 2.5 weeks since the onset of my more frequent symptoms), he did an exam, found brisk reflexes but no weakness, did an EMG/NCS on my “affected side” (right arm, right leg, right trap, right paraspinous)… all came out clean. Diagnosed with likely CFS/BFS, and even said “you do not have ALS” multiple times. Plan was for follow up was some basic lab work.



I was extremely relieved, ran up and down a hill without SOB, ate a large lunch afterwards, and multiple family and friends were able to breathe a sigh of relief. All was well until yesterday when I was eating dinner I started have difficulty chewing/swallowing again. Transient cramping/articulation problems with my right arm and leg. Transient episodes of SOB. My family (and it even seems like the physicians) are attributing this to anxiety (I’ve had anxiety problems in the past), but I feel otherwise. My hypothesis is that I am still exhibiting mostly upper motor neuron symptoms, that aren’t translating into lower motor neuron signs/symptoms yet (EMG clean, no weakness). The only thing that is odd is the rapid progression of the symptoms, and the transient nature (but maybe it’s all UMN transient spasticity effects)? What do you guys think? Thanks in advance.
 

Nikki J

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You asked what we think so I will be blunt. I think you have anxiety.

MND does not come and go. Nor do the symptoms bounce around. You were examined by 2 neurologists, one a neuromuscular specialist. Neither found any true UMN signs by your report and clinical exam is where these are found. If you had spasticity they would have seen it. Brisk reflexes are a normal variant and are common in the anxious

your hypothesis shows your anxiety. You don’t have umn signs Believe your doctors. Get help for the anxiety
 

lgelb

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I would look at potential food and environmental allergies, the support that your bed and pillow are providing, and make sure you're adequately treating the GERD. Re-evaluating your nutrition, along with a food diary to look for GERD triggers, however they arose, and hydration could be valuable as well. I presume your PCP ruled out adult-onset asthma and the like. But this is not ALS.

Best,
Laurie
 

THouse85

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Update.

Symptoms seem to be progressing. Dysphagia is getting worse and I’m feeling weakness of my facial muscles, precipitating saliva to pool in my mouth. My tongue is starting to get tied when attempting to articulate certain words. Voice is getting weaker. Each day it feels like it’s getting worse and worse.

I’ve had more frequent episodes of SOB. Core muscles are continuing to feel weaker. The worst part is the fasciculations are practically generalized now, worse on the right side. Cramping has moved on the multiple muscle groups. I am convinced this is unfortunately ALS

A second opinion from another neuromuscular clinic neurologist yesterday thinks otherwise. He said that he can comfortably say“this is not ALS”. In his assessment, an initial, very early “clean” EMG... no clinical evidence of weakness (except dysphagia?) and he said the rapid progression of symptoms without definitive weakness in a certain region is “unheard of”. Meaning, I should be severely dysphagic/dyphonic before seeing fasciculations all over. The time period has been three weeks.

To be honest, I feel like my neurosis of feeling every little symptom progression and the fact that I presented to a specialist for an EMG literally two weeks after the onset of any symptoms is what is skewing their opinions. I present to them with every small degradation of my neuromuscular system before clinical weakness sets in and there is no objective data but my symptoms. I’ve read of multiple rapidly progressive bulbar onset ALS that have presented similarly.

The anticipation and anxiety of what tomorrow’s progression will bring is ripping me and my family apart. I really respect those afflicted with this disease and the CALS that support them.

Thanks for listening
 

lgelb

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So you acknowledge a neurosis around your health...
We all know that ALS is high on the list of feared diseases.
Do you see a connection?

Your fears have taken over your life. Your doctors' ability to diagnose you is not influenced by how and how often you present your symptoms. You are not describing any kind of ALS, bulbar, rapid-onset, or otherwise.

Your symptoms are not objective data. Clinical exams and EMGs are.

Please seek counseling for your anxiety and obsession, if not for yourself, for your family.

Best,
Laurie
 

affected

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Time to leave here and get help mate, this is NOT ALS as you have been told by qualified people in person and here. Please don't continue here, our members are terminally ill, but you can be helped!
 
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