FACIAL MUSCLE WASTING AND MUSCLE TWITCHING THROUGH OUT BODY

[WHAT TO THINK]

I AM A 36 YEAR OLD FEMALE, MARRIED/4 CHILDREN. SEPT. 03 MY CHEEK BONES BECAME EXTREMELY PROTRUDING. LIKE MY BONES HAD GROWN. FAMILY AND FRIENDS NOTICED ALSO,ASKED HAD I LOST WEIGHT, I HAD NOT. I ALSO NOTICED A KNOT ON MY HEAD JUST ABOVE MY TEMPLE. I WENT TO A NEUROSURGEON WHO SAID MY BONES HAD NOT GROWN,MY TEMPORAL MUSCLES HAD WASTED, ATROPHIED, GIVING THE APPEARANCE THAT MY BONES GREW.AND THE KNOT WAS NOW NOTICIBLE SINCE THE MUSCLES COVERING WASTED. HIS DIAGNOSIS, MYOTONIC MUSCULAR DYSTROPHY.HE SENT ME TO A NEUROLOGIST.I HAD THE DNA TEST FOR THIS. IT WAS NEG.I BEGAN EXPERIENCING MUSCLE TWTICHES THROUGHOUT MY BODY.I HAD AN EMG, THAT WAS NORMAL. SO I DON'T THINK I HAVE ALS. HE SAID I HAD NO MOTOR NEURON DISEASE EITHER. HE SAID I DON'T HAVE ANYTHING SERIOUS BUT SOMETHING IS WRONG,HE DOES NOT KNOW WHAT. HE GAVE ME NO OTHER OPTIONS.ITS BEEN THREE MONTHS I HAVE TWITCHES NOT ALL DAY, THAT I CAN TELL,BUT EVERY DAY. MY LEGS,ARMS,STOMACH,BACK,MOUTH,EVEN SCALP,BUT ODDLY NONE IN MY EYE. I HAVE COME TO LEARN ABOUT BFS, MAYBE I HAVE THIS, ONLY I HAVE NEVER HAD ANXIETY ISSUES, MY STRESS LEVEL IS THE NORM FOR A PERSON AT THIS STAGE IN THEIR LIFE, NO MORE FOR ME THAN IN THE PAST. ALSO, BFS HAS NO MUSCLE WASTING AND I HAVE BEEN TOLD BY 2 DRS I HAVE FACIAL MUSCLE WASTING. DOES THIS SOUND LIKE BFS? OR CAN YOU GIVE ME ANY OTHER OPTIONS THAT I COULD CHECK INTO, MAYBE SOME OTHER TYPE OF ADULT ONSET MUSCULAR DYSTROPHY, I AM NOT AN ALARMIST BUT SOMETHING CAUSED FACIAL MUSCLE ATROPHY, NO WEAKNESS, BUT WHY THE MUSCLE TWTICHES NOW? I DON'T KNOW WHETHER TO PERSUE THIS, WHAT TO, OR WHERE TO GO NEXT.

[gaamgar]

A related discussion, Muscles Dragging Around Bones was started.

[beckysue15]

A related discussion, wasted facial muscle was started.

[japdip]

Some folks use caps due to difficulty seeing ........ Freedom to do as we please or to do what we need to do. Please try to be patient with others. One day you may need to use caps in order to read easily. I don't believe this Forum is here for us to criticize others.

[shamrock]

KimSB...This Forum is to help people.  If you can't, please don't post!  Erin

[KimSb]

Turn downd the volume! That bold print is very distracting to read.

[CCF-Neuro-M.D.-CS]

I would recommend that you continue to evaluate this. This does not sound like benign fasciculation syndrome. I am not sure how the doctors excluded other muscle/motor neuron diseases other then ALS. Without looking at the EMG results, I can not state what the problem may be. I would recommend seeing a neuromuscular specialist at an academic center. Blood tests which may be checked include muscle enzymes (CK, and aldolase), and markers of inflammation (sedimentation rate and C-reactive protein) to begin with. You may need to have a repeat EMG, depending on the previous study results. Good luck.