Reply To: Fasciculations

I was diagnosed with AIDP (GBS) in March of 2017. While going that experience I recalled having muscle twitches, tremors and fasciculations in my legs but the went away at least I thought so. I retired from my job in Law Enforcement in March of 2019.

Aside from having fatigue and tingling sensations from the knee down in both legs and the forearm to the tips of my fingers in both arms life appeared to be consistent and somewhat normal.

In August I enrolled in college to start a new career in the medical field.

I had not been to school in over 25 years and took 12 units to start off this new endeavor. One of the classes I took was beginning weight lifting.

Not long after starting I began to notice the muscle twitches. At first they were in infrequent and located in my calf muscles. Then progressed into twitching all day and night in both legs.

I backed off on the exercise and did what I could to maintain the grade in the class I wanted.

In October of 2019 I saw my PCP who directed me to supplement with vitamin B complex and sent me to Neurologist. In January I was seen by the Neurologist who ran labs and did an EMG/NCS. The labs came back with elevated CK levels at 373 and the study showed I had perineal nerve Damage (meaning no response)in my left leg and various slow responses over all. The Neurologist ruled out MG, Parkinson’s and ALS.

From there I was sent to a Rheumatoid specialist who ran more labs. All labs came back normal with a CK still elevated by not as high.

I was then sent to a Neuromuscular Specialist who initialLy diagnosed me with BFS but at the end of the appointment, she was really taken with size and shape of my ankles and the muscle atrophy I had in my left Calf and my Right Quadriceps as a result of the effects of GBS.

So she decided to run more tests to include CT scan, MRI, labs, and another EMG/NCS. Most results came back negative except for the CK, B6 and EMG/NCS. The CK was still elevated at 258 and my Vitamin B6 was at 167. Additional she stated the EMG/NCS came back abnormal from the last one done in January 2020.

I had asked her if the months of supplementation of B vitamins could have cause an effect like this given my B6 levels were so high, she stated, “No” without considering what I was saying. She seemed so focused on diagnosing me with ALS.

So I researched on my own and found that toxic levels of Vitamin B6 can mimic symptoms I was having and Could cause the symptoms I was experiencing like muscle twitches, fatigue and brain fog!

I am scheduled to see another doctor in October 2020 to receive a second opinion.

My question to everyone is, has anyone experienced muscle twitching (Fasciculations)during GBS and months after?