Concerned about possible ALS in 37 year old female

I am a thirty seven year old female with overall good health until recently.  I had two back to back bad viruses (respiratory with high fever) back in November.  A few weeks later I started having muscle twitches that are all over my body (for five months now).  I had an office  neurological exam in February that was normal and am going back for an EMG in a few weeks.  I have had feelings of weakness in my arms and legs but still able to do everything (although my muscles fatigue quicker than usual).  What has me really scared is now the twitches are in my jaw, lip, tongue, chin and other facial muscles.  These have been constant the last week or so, making my jaw tremor.  I am also getting the feeling that I am having trouble getting words out clearly, although no one else has noticed. I have been having jaw and facial pain also.  I have recenlty had a cold and have a chronic cough I am worried about.  Also at night I notice an occasional invountary swallow or breath from time to time.  I also feel like I have a tremor in my calfs and arms on and off -not sure if these are twitches or something else.  I have also had a brain and spine MRI back in February that were nornal. I am under a ton of stress and anxiety over this as I have two small children am terrified I have als (maybe bulbar onset?).  Can you please share any thoughts? Thanks for your time.          

[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.

It must be emphasized that in the MAJORITY of cases 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 (as mentioned earlier 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. 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 (and please understand I am not trying to imply I feel this is the case in you), 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. In general the symptoms would not be episodic and triggered by certain things but would be more constant/frequent without consistent triggers. 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-like viruses, 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. Other conditions, such as migraine, seizure, and hypocalcemia, can lead to fasciculations.

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.

I hope you find the differential that I have provided useful. It is reassuring that you have had a normal neurological examination. When will the EMG/NCS be performed? I would suggest that you continue following up with your primary care physician. Further referral should depend on the results of the EMG.

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

[matt808]

Hi, just by the fact that you are aware of bulbar onset leads me to believe that you have already researched ALS. I want you to know that I have had a nearly identical experience to yours. One year ago, I began to have muscle twitching all over my body (yes even my face and tongue) and after looking up my symptoms on the internet (always a bad Idea) I became positive that I had ALS. In the following weeks I started feeling tired and my limbs felt heavy, I had trouble swallowing and would have slight difficulty talking. In retrospect, I believe that these symptoms were a product of anxiety (all of which happened after I read the list of typical ALS symptoms). I had an EMG done which came back negative, and although my muscles still twitch every now and then, my symptoms have mostly gone away. The first thing people with ALS notice is the inability to fully use a limb. Musce twitching usually occurs AFTER a significant amount of muscle in that limb has already wasted away (a phenomenon that is very visible and paralizing, not at all like to 'tired' feeling you described--> likely due to anxiety). This means that if you're experiencing twiting in a limb that you can still move (even if it feels weak), you're fine. There is a condition refered to by some as BFS, most doctors don't recognize this as an illness but moslty refer to the affected patients as having benign fasciculations (twitching). The fact is that many many people have your symptoms and turn out just fine aside from the annoyance of the twitching. This website saved my life and I hope it will save yours http://www.nextination.com/aboutbfs/

[ewford]

I cannot stress enough for you to get a proper lyme test done through IGENEX labs.  Your symptoms are exactly like mine and I wasted 14 months being missdiagnosed.  Fasticulations are caused by Borellia Burgdurferi bacteria and Magnesium.  The bacteria utilize Mg.  These are called fasticulations.

  Do you have any other unusual issues, such as headaches, sensativity to light, joints ache, bowell issues, stomach pain, trouble swallowing, heart palpatations, perephrial neuropathy, vertigo,   Is the cough a dry cough?  any "female" issues as in loss of period, irregular issues? constipation/diarhea?

  If so, you could have a Mycoplasmal infection.  it is an intracellular bacterial infection that will not show on standard medical tests.  dont even try to get a labcorp Lymes test, they are worthless and very innacurate.  Contact ILADS  (www.ilads.org) to find a Dr that can properly diagnose you, otherwise you will progressively get worse.  believe me, no standard doctor will be able to figure this out and you will be pidgeonholed.  Research lymes symptoms and see how you measure up.

[mk892]

Thanks for taking the time to reply.  I am glad you are doing better.  I am hoping good results on the EMG will ease my mind, as they did for you.I  will read up more on the BFS.  I am praying that is what it turns out to be- ALS is such a terrifying disease.

[mk892]

Thanks for the idea about Lyme disease.  My doctor ran a standard Lyme test, I had no idea there were different labs to choose from. I do have many of the other symptoms you listed but chalked a lot of it up to my extremely anxious state!  I will check out the website you mention.  Thanks again for taking the time to share your thoughts.

[mk892]

Thank you doctor for the response.  I had my EMG done on Friday. They did my right arm and leg (five different locations each) and one behind my ear,  Everything came back nornal, no fasiculations or sharp waves etc.  Would this normal EMG rule out ALS?  Was this comprehensive enough of a test?  Would bulbar onset show up with these locations tested?   am still concerned about the frequency of twitches in my lip/chin/jaw  (feels like a jaw tremor) and just in the past couple days in my one foot, where one of my toes feels very strange/like a pulling feeling and there is twitching in that area now.   I am also having muscle fatigue all over my body including arms, legs, shoulders and sometimes jaw.  I had hoped this EMG would put my mind at ease but I am still worried. Thanks again for your input.

[ewford]

Do not waste time on getting a IGENEX or comparable Lyme test.  You will get missdiagnosed by every doctor since their tests for the individual symptoms will show up NEG.  The Borrelia Burgdeferi bacteria causes ALL those symptoms and more, headaches, eye pain, bowell issues, joint and cartilage issues.  This bacteria literally DRILLS itself into tissue because it is shaped like a corkscrew.  The longer you wait, the harder and longer the treatment.  You also need to be aware of co-infections.  Come to the Lyme boards to get more info.