Son worried about my father need advice!

Posted by lookingforhope @lookingforhope, May 27, 2019

Hello, My name is Damien and I'm here to ask some questions for reassurance and advice in general. Back in September 2018, my father started having facial twitching and numbness well as tongue fasciculations and was scared that it was bells palsy or ms or something like that he headed to the ER and got shrugged off, a couple of weeks (or days?) later he started having constant fasciculations in his calves and he googled it and it popped up MND, Since he is a hypochondriac he got scared a ton and headed straight to a neurologist, and that's where this extremely stressful journey starts. The Neurologist started off with an EMG no blood tests no clinical nothing straight to EMG his first EMG on November 6th, It came back clean nothing but fasciculations a couple of weeks later my dad Begged the neurologist to give him a clinical The Neurologist does the clinical but it was a kinda wishy-washy clinical no deep tendon reflexes though, The Neurologist scheduled him for an EMG March 6th, 2019 at this time he had Bodywide fasciculations I mean EVERYWHERE some sensory issues tingling numbness, etc.. fast forward to March 6th, 2019 and his 2nd EMG wasn't so clean… he had +1 or +2 fibs and Psws in every muscle tested they immediately but at the building that we did the Emg in they told us NOTHING they just told us we could see two als specialists Brent Beson OR some random guy in Texas chose Beson because we knew who he was and knew he was really good, we went home confused not knowing whats going on, my parents went to the office for the EMG report and they came back home…crying his primariy diagnosis was motor neuron disease differental diagnosis ALS it was devastating the one time the hypochrondiacs fears come true… or so we thought on May 6th we went to Dr beson he did a thourough clinical and pretty much called our last doctors idiots and saying als isnt even isnt even in our atmoshpere and his BFS (Benign Fasciculation Syndrome) was the only thing on his list he scheduled a mri and a ck blood test both came back clean he did say though that he won't do a 3rd emg to try to find what they think they found and he has no weakness or atrophy so in turn its not mnd since those are the two symptoms you need to have mnd/als and hes going to see beson for his diagnosis in june His current symptoms right now Bodywide Fasciculations, every muscle in his body, Sensory issues like numbness tingling, etc…, and burning in his tongue, tongue soreness and burning in the mouth Whats your guys opinion on this? does this sound like anything to you guys? thank you in advance, Damien

(edit) my father is 30 years old

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@lookingforhope

(edit) my father is 30 years old

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Hi, Damien, welcome to Mayo Clinic Connect.

It must have been a relief to hear from the neurologist – a specialist in neuromuscular disease – that the diagnosis of ALS and neuromuscular disease was incorrect. You list your dad's current symptoms as body-wide fasciculations and sensory issues like numbness tingling, and burning in his tongue, tongue soreness and burning in the mouth. Correct? In preparation for his consult with the doctor in June, I might suggest that you and/or your father keep a journal of the symptoms. When do they happen? What is their severity? How long do they last? Are there any related triggers – things that seems to cause or correlate with the symptom. For example, certain foods; do they happen when sleeping or while awake only, etc.

This back and forth and searching for answers must be very confusing and stressful for both you and your father. You mention that your father is just 30 years old, making you a very young caregiver. Are you one of your father's main caregiver? Do you accompany him to his medical appointments?

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