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BFS or ALS - 23 yrs, scared

BFS or ALS - 23 yrs, scared

Hello,
Im 23 year old male, pretty anxious and nervous, 12 years ago I had thyroid problems (still have "granulate" thyroid surface - doc said).
Last 1,5 year Im experiencing widespread twitching - arms, shoulders, thumbs, thigs, legs, chest, face... They are not constant, usually I have 5-10 per hour in different spots.
When I have read about ALS last summer, my psychiatric hell started.. Now Im quite OK, but those twitching is still present..but whats new - I have feeling my arms are quickly tired and my joints are cracking. Im scared - what if some muscles there atropfied and thats why the tendons and bones do such noise? I had shoulder RTG - ok, surgeon said "no atrophy".
But Im so scared, I know its not typical to get ALS after 1,5 years of twitching, but I also know there are exceptions.
My EMG was done 10 months later - clean. EMG exam (last month) - clean.
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Avatar_dr_f_tn
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 your doctor.

Without the ability to obtain a history and examine you, I can not comment on the what these twitches are nor what is causing them. However, I will try to provide you with some information regarding possibilities. In general, though I can not specifically say this about your case without having seen you, 2 normal EMGs makes ALS very unlikely.

Most commonly, fasciculations are benign, meaning that they are of no consequence and are not resulting from a serious cause. In such cases, they may be related to anxiety, and often occur after recent strenuous activity or muscle over-use. If they are bothersome, there are some medications which can be taken to reduce them.

It must be emphasized that in the MAJORITY of cases they are BENIGN. However, when fasciculations occur in the setting of associated symptoms such as loss of sensation, tingling or numbness, weakness, trouble swallowing and other symptoms, the cause may be due to a peripheral nervous system problem. The location of the problem could be the anterior horn cells, the area where the nerves that supply motor innervation to our body comes from. These are the cells that give off the nerves that allow us to voluntarily contract our muscles. The diseases that might affect the anterior horn cells include ALS (also called Lou Gherig's disease), a condition called spinal muscular atrophy, polio, west nile virus, and other infections.
Another nervous system problem, neuropathy, may also lead to fasciculations. There will again be associated weakness or sensory changes.

Benign fasiculation syndrome, which I will abbreviate as 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. Sometimes, fasiculations can be due to or made worse by caffeine, anxiety, exercise, and certain drugs.

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. If you feel treatment is necessary, this would be best discussed with your neurologist. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.

I suggest follow up with your primary doctor and neurologist at regular intervals. It is important that you discuss your concerns with him/her.

Thank you for using the forum I hope you find this information useful good luck
2 Comments
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Avatar_n_tn
Thanks, altought your answer was just general about BFS, nothing about my joints etc.

I dont understand the great difference - neurologists on this site always say: twitching without weakness is not caused by ALS. I have it for more than one and half year, so why there is co uncertainity in the answer...
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