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?