BFS-BENIGN FASICULATION SYNDROME-

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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 465
   Posted 4/26/2010 12:15 PM (GMT -6)   
Hi to all my friends at HW--
 
I am going to post this here & on the "Fibromyalgia" section-as I feel both forums would have people who can relate to this--And-I need as much 'feedback" as possible- :-)
Rather lengthy- but please bear with me-
 
This past Oct-got a flu shot--in late October I came down with a really bad case of the flu( worst in my life--I even went to ER---coughing so bad)--high fever---etc 
Thankfully--Have a great pulmonary Dr--was tested for asthma--etc--all normal--but had cough for 10 weeks-!
 
Anyway---in mid December started coming down with strange & scary neurological symptoms! smhair
 
Upon reclining on my bed---I was getting a strong ..."myoclonus"....in my back muscles...near my shoulder blade--!   It was concerning...but not really worrisonme---Then..on a Saturday nite....reading in bed....before dinner....when,,...the myoclonus went to BOTH sides..(bilateral)....almost like a seizure-
 
Now---ALL  of my Specialists Drs...(cardio- E-N-T-  gastro--pulmonary)---are at one terrific hospital....here in Philly--so the Dr--can look into a computer....& see all tests---etc-!
 
ALL....but ONE....Dr--my neuro....who is at another "respected"...hospital--(I see her twice/year...just to get botox injections.....around my eye---for blepharospasm)--
 
That nite--I callled the emergency # up---& the "on call"...Dr....(he was eating dinner...I could tell-  his mouth sounded full)--was a neuro...I know....from this hospital--!  He seemed rather indifferent---told me....if i were really bothered....go to the ER...(which I did--& as you know--no offense intended...ER Drs.....know nothing about "neurology")--Saw nothing wrong...(my vitals were fine)--& i was sent home---
 
The myoclonus settled down...& Later that week--I saw my "botox neuro"--(She knew of my ER appearance!  She knows I am a rather "anxious"...guy & attributed my "myoclonus"...to anxiety!
(Don't ALL Drs.....esp neuros..........SEEM  to do this?
 
Anyway---went home feeling reassured!---But---in a couple days---they..(the myoclonus..in my back)--started acting up again---
 
As a writer---I head out to California...".(Hollywood)---each winter....to 'pitch'...my scrips...(and escape the East Coast cold)---My dear wife....was in her final few months of working....(before retiring from the hospital..I have my Drs...as Medical records supervisor)---
 
Anyway--I get to my apt--- at 4 PM...after a 5 plus hr flight---& after eating....& doing errands---I try to go to sleep that nite...at 10 PM-!  My dear friends here at HW---what I experienced...was "the"...most terrifying time of my life!   Muscle myoclounus.....fasciculations...in my back---NOW spreading up my neck.....(around throat)---to my face and scalp!   I callede my wife!  She was worried...terribly!
 
I took an extra Valium.....(broke a 10 mg....in half...I had just taken 10 mg....3 hrs earlier!--it did not "touchI called up...911--the Beverly Hills....medics....came in...like 2 minutes!
 
When they came in...i was sitting at the table (I was not fully aware---THEN....how "positional"...in nature my myoclonus was--)---They took my 'vitals'...i was fine!  One really nice guy--said..IF i went to ER....i'd be waiting for hours,,,.....&  since my 'vital signs....were normal..probably nothing they could do----!
 
They left--I laid down...again...& again...the muscle contractions--!  Did I have MS?   Or did i have something worse,....like...ALS?    My wife wanted me back home ASAP---!
 
I called up the airline---a next day flight...was close to $600---(on my CC)---
 
I made the reservation..& came back home...another 5 hr flight!
 
Next day--called up my neuro....& their 8 Dr..."Movement disorder"...practice (PM me...if you wanna know,.....who these unfeeling 'creeps'...are!  Sorry to talk like this--but they treated me...like trash!)
 
My friends.....I called up my neuro---! she would NOT...get on the phone w me...but told her "med asst)---I'd have to wait...till...get this...my  NEXT appt.....LATE April.....(like...later this week...& this was January 3)--a FOUR MONTH.....wait!      She said to her "asst"...I was "probably experiencing anxiety"-!  My wife got on the phone....practically begging...(After I had called 3 times!  I asked....for some tests...at least an EMG....an EEG...(was it a seizure)---blood tests!
 
Their answer to my wife?..."The Dr. does NOT FEEL....he needs any other tests at this time!"
 
And...when my wife talked with the OFFICE MGR.....to see if I could see another neuro---at the office--just to LOOK at me---her answer was.."that is not our protocal"
My wife said...She was concerned..AND...I was worried sick-!  Her snippy retort?  "The Dr said your husband should see a therapist!"! mad     I was furious!   She also ordered ANY of my calls to be sent up to her-- mad
In desparation....I called up a neuro---I had seen....(after a sleep study)--a few months earlier...AT "my hospital"...where all my other Drs---were ...& where my wife worked!
He is a nationally known....respected neuro--specializing in epilepsy--(He has written dozens of articles...& lectured at Mayo Clinic)--
 
His Admin sec....a very sweet...caring,,....young lady----was...at that time...& to this day....an ANGEL-! :-)       She remembered me...& was "appalled"...at the story I told her!  She took down a few facts about my condition---& my phone #----
 
My dear friends at....HW---I got a call at 8 PM...THAT nite.....from this neuro--!  He was just finishing a brain surgery....& yet....he took the time to call me!
 
"Robert....this is Dr-----What is going on?"   I was in tears....(from fear AND relief)---as I told him the story!   He told me..."Come in tomorrow...at 10 AM...I can see you!"  Then...he reassured me---"And don't worry..it is most likely nothing serious!"---WHAT a nice,....caring...empathetic man!   Surely...being a Dr---was a 'calling'...for him! smilewinkgrin
 
I saw  him....next day---he looked me over carefully--gave me thorough neuro--SAW & felt the "muscle contractions"....said..."You have...'myoclonus'--!  It is nothing serious--but...with my request..he set me up....to see the "movement disorders"....neuro---next door----TWO days later!
 
When I tell you---he also examined me....carefully--same Dx---but he ordered a battery of tests--
 
Over the next...three weeks...I had...
1) An EMG...(that i had begged for)--was "normal"....no 'motor neuron disease"...just--as he had suspected---some "arthritis"...normal for someone my age...(62)--(never had any weakness)-
 
2) TWO   MRIs.....cervical spine (again...'normal'...w some arthritis)--and a brain MRI--totally normal.(no MS lesions)
 
3) blood tests for my thyroid...normal---
 
4) AND...with my neuro that calledc me..(the epilepsy specialist)--he gave me TWO EEGs....one...30 minute study!  (with the strobe lights...etc)--and a 24 hr....ambulatory..(I had also complained of...some brain zaps)--Thankfully--while wearing it--I DID get some "brain zaps"...and "myoclonus"...& my EEG....was totally normal..."NO correlation"....w symptoms!
 
The final Dx,,,....."Benign Myoclonus Syndrome"...(same as above..."Benign Fasc Syndrome")--as my new neuro said..."Fasics....& myoclonus...just similar muscle movements...along the "movenent disorder continuim"--
 
No meds were prescribed...(tho LATER....when I started getting some minor 'cramping'...my first neuro....that called me---prescribed....some "Skelaxin"...Took a couple....helped...but.....made me a bit nauseaus....& lite headed---!
-------The bottom line,,.....!  It amazes me...HOW some Drs--can be so "callous"--!
 
That first neuro--the
BOTH neuros....reassured me..I was OK--NO MS....NO   ALS.....!   Just a "benign condition"...that would resolve!   (They could not give me a time frame....maybe...4 weeks,,,,4 months...I hope NOT 4 years tongue )--But--at least...my worst fears were alleviated!
 
As of now...late April....the myoclonus...is much improved....tho I get some twitching and fasciculations..in my arms...legs...chest!     My neuro assured me..."There is...OFTEN change before a neuro condition resolves!
 
I am seeing a therapist for my anxiety...(just started...."biofeedback-I'll let you know--how it goes)--& started...."acupuncture"---! turn     ---It is rather relaxing!
 
And...I have an 'online support group"...for my BFS...(NO two caes are alike...)---
 
A few questions to you kind people here---!
 
1) Have any of you experienced....."myoclonus"? eyes
 
2) I experience...from time to time...very sore "rib muscles"...!   Like I worked out!   Could this be...."Fibromyalgia"...(which is also a condition....with "hyperexcitable nerve endings")
 
3) My FINAL one---I was..."Thinking"....abou bringing a..."small claims suit"...against the first "neuro."...& the group---for their...as I put it..."Malpractice thru negligence"--nothing...big---just to recover MY losses...(airfare....a lost winter....worry --anxiety...fear)---It would only cost me about  $85 to do the suit---!
 
I have ALL of the tests....the second Neuro ordered..to show the judge...that THIS neuro--felt further testing was necessary!    Also--Just to show those "unfeeling"...Neuros...I will NOT let this slide...& to make sure it does not happen to anyone else!  (I'm only gonna sue for like....$2,000---how can you put a price on...besides my lost money....the terrifying fear..I had! smhair
 
Worst case scenario---If i lose--I STILL make...at least ONE neuro--& maybe the creepy office mgr...take a few hrs...of their time...to come to court- tongue
 
The ONLY....reservation I have  is.....The really NICE neuro--who called me?  He knows..& is friends with the chief neuro of the other hospital!  I'm hoping--he does not give a darn-! yeah
 
Please---get back---with your.."take"..on this...& response to my 3 questions!
 
God bless you all...here at HW---you are like "family".....to me---regards--Robert :-)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 4/26/2010 11:03 PM (GMT -6)   
1. I have myclonus.  I have it in my legs in the evening after a long day at work.  If it is particularly painful, I sometimes take a klonopin.
 
2.  I don't know too much about fibro.
 
3.  I consider the medical field a consumer market.  If I have a gripe about a doctor I don't return.  Lawsuits are part of the reason medical costs are so high.  You can file a complaint against the doctor if you feel he was truly negligent with the licensing board.  There are also many 'rate your doctor' sites.  You could warn others there.
 
Although you did receive a diagnosis, note that the diagnosis contains the word "benign".  That indeed means harmless.  I hope you are feeling better real soon.  I am very glad to read that you are getting some treatment for anxiety.  When a doctor says, "you are just anxious" or "this is anxiety"....you can point out that you have received treatment in this area and have the tools to cope with anxiety.  That way you are heard and not ignored or brushed off.  Best of luck.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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