Avatar universal

Can this be ALS? If not, What?

Started 2/07 with achy body, chills and extreme feeling of weakness in my legs.  I stayed in bed for nearly 3 weeks except for work.  Had headaches, pain behind eye and muscle twitching.  Symptoms improved leaving only one leg feeling weak but better than before.  Since then I still have muscle twitching, still feel very achy, and had bout of a painfull dull ache from lower back to my right foot concentrating in the upper leg area.  Hands became included with pain between thumb and index finger, shoulders are painfull, back hurts.  Recently I have had to clear throat more than normal, have had pain under my tongue which made so far only me realize that at times saying words such as "sit" its hard to make the s sound.  That symptom comes and goes but is the latest one.

Now for Dr's, first neuro thought I was crazy but gave me a mri of my neck at my request.  No problems.  Moved onto another neuro who ran me through a ncv/emg and two more mri's one of my head and one of the back and outside of minor findings nothign to explain symptoms.  He says no to als.  However the lady at his office who did the emg only did it on one leg and one arm.  The needle test in my leg was ok except for one spot that left continued noise on the machine.  She asked if my back hurt which at that moment it did not and she said sometimes noise is due to a back condition. I got the results and all was normal.  I have a sleep deprivation study done as well all normal.  All blood work is normal except for a minor flag on antiphospholipid antibody.  I moved onto a stanford neuro who has seen many als patients and said that my prior neuro was good and that he didn't think anything more was needed.  That my achy tired painfull symptoms with twitching didn't sound like als, hmm? He listened to everythign I had to say but didn't find anything.  

What would you do?


Tom R
2 Responses
Sort by: Helpful Oldest Newest
279679 tn?1207130391
I would like to add the possibility that the twitching may be due to benign fasciculation syndrome (BFS)

This page regarding BFS may help you.


Helpful - 1
292349 tn?1201478043
Hi TomR1972,

ALS is also known as Lou Gehrig's disease.  It's a disease of degeneration of both upper and lower motor neurons manifest by lower motor neuron signs (weakness, wasting, fasciculation) and upper motor neuron signs (hyperactive tendon reflexes, Hoffmann's sign, Babinski sign, clonus).  Its prevalence if about 5 in 100,000 in population.  It has increased frequency after age 40; 10% begin before age 40; 5% before age 30.  

Clinical features of ALS:

Onset symptoms:  weak legs (footdrop), hands (painless difficulty with buttons), proximal arms, slurred speech, dysarthria, dysphagia; spastic gait disorder.  Ultimately all skeletal muscle affected except sphincters (bladder and bowel control), eye movement.

Course of disease:  progressive, no remissions, relapses.  

Diagnostic testings:

-EMG, neurological examination (requires to see both upper and lower motor neuron signs).

From the description of your symptoms listed above, gross body/limb twitching is not a typical signs of ALS.  However, fasciculations is part of the lower motor neuron signs; they are small muscle twitching underneath the skin, frequently described as "moving snake underneath the skin".  You can see fasciculations in any muscle groups, including the tongue.  

You may want to have your neurologist to recheck EMG to see if there is any changes in the exam, as you have progression or persistent of symptoms.  

Another possible diagnosis of your "twitching":

- seizure (diagnostic testing: EEG)
- stress
- muscle fatigue

For your weakness and muscle pain, myopathy is also a possibility.  Myopathy is a disease of muscle.  EMG/NCV typically can diagnose myopathy.  It sometimes requires muscle biopsy, blood tests (CK, aldolase) if indicated.

Your pain in multiple locations of your body can also be due to fibromyalgia.  It is a pain syndrome.  A rheumatologist may be helpful in this situation.  

Good luck.  Thanks for using MedHelp Forum.

Helpful - 0

You are reading content posted in the Neurology Forum

Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease