ALS Concerns

I am a 46 year old male with weakness, fasciculations and loss of muscle tone bodywide, some assymetric. The area most affected is the calves where symptoms of weakness and fasics started 6 months ago. I have no clinical weakness or sensory loss. My weakness in my calves has been progressive into my upper legs and glutes with no good days. Fasics in calves have gone from strong twitching to very fine that are not usually felt unless there's contact. I have aching and twitching in my hands especially between the thumb and forefinger. Also, my tongue has a deep, wide groove in the center, it is white and furry with teeth marks on the side. I have a constant sore throat but no speech or choking problems. I have widespread fatigue and fascics. I have had three clinical exams. Two were at an als clinic. All exams were normal except one at the ALS clinic that was done by a NP. She said hyperreflexes with my bicep/tricep relflexes at 3 and noted decrease in muscle tone in my right bicep, tricep, calf and foot. I have completed all bloodwork and scans for ALS mimics that they know to order. I have had two "basic" emgs and nerve conduction studies. They were normal. The first EMG was done by a general neuro 3 weeks after symptoms started. She did a total of 4-5 sticks on two limbs. The second EMG was done at an ALS clinic at a teaching university by an intern supervised by an ***'t. professor 4 months after symptoms. They did 7-8 insertions on selected muscles of three limbs and thorasic. Most of the insertions were on what is now my stronger left side (I am right handed) Communication breakdown? However, they did stick both of my calves which are both very flaccid when relaxed. They said they saw no sign of nerve or muscle damage. So I have been told three times "No ALS" by a general neuro, an ALS neuro and a NP at an ALS clinic. I have been told BFS twice. I followed up a few weeks later and was told BFCS because of my complaints of constant weakness. I do not have cramps. I have constant aching and stiffness due to weakness.every day in my legs while standing. Can BCFS cause chronic daily symptoms? Also, the only test that has been abnormal is copper serum at 45. Can this cause fasics, constant weakness and assymetric atrophy? The ALS neuro told me by phone he was retracting his BFCS diagnoses in light of the copper findings. I have been told to supplement 6 weeks 4 mg/day to see if this cures it.. I feel like I am just being put off until clinical weakness and possible later EMG's show changes. In summary, can BFS/BCFS explain my constant symptoms? How much confidence should I have in these EMG's? Can copper level @45 cause all of this (P.S. I do not wear detures that may associated with copper/zinc poisoning) Thanks!

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

The majority of cases of muscle twitches are benign meaning that they are of no consequence and are not resulting from a serious cause. In such cases, the twitches may be related to anxiety/stress, caffeine, and often occur after recent strenuous activity or muscle over-use. It is important in such cases to reduce stress/anxiety levels and to reduce caffeine intake. Tremors of the hands can be physiological that is exacerbated by stress/anxiety and caffeine. Benign fasciculation syndrome (BFS) is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurrence of a serious neurologic condition is low. When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.

However in general when fasciculations occur in the setting of associated symptoms such as progressive loss of sensation, tingling or numbness, weakness, trouble swallowing and other symptoms, the cause may be due to a peripheral nervous system problem. It is good that you have had a workup for ALS which has so far been unremarkable. Other conditions that can cause similar symptoms include various viral infections and metabolic abnormalities (such as thyroid dysfunction).

Often these symptoms may reflect emotional/psychiatric problems related to stress (what is called somatization disorder). The latter is a true medical condition whereby instead of a patient experiencing depression or anxiety, they experience physical symptoms, and once the stress is addressed, the symptoms resolve.

Continue following up with your neurologist. Have you had spinal imaging?

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[breezer22]

Thank you for taking the time to respond. I have had extensive spinal imaging. Three separate MRI's. Brain with upper cervical, thorasic and lumbar. They show no explainations for my symptoms and have been reviewed by multiple physicians. Thyroid study had been done and was clear.
Can BFS cause daily, chronic weakness without relief?
Can copper serum levels @45 cause these symptoms? Chronic, progressive weakness with fasciculations and modest atrophy.
What is your impression of the EMG study as described in my previous post?
Thanks again for your viewpoints.