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MY STORY--BFS...AND POSSIBLY FIBRO?

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Posted 4/26/2010 6:21 PM (GMT 0)
Hi to all my friends at HW--

I am going to post this here & on the MS" 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-!  (I mention this...'cause I think THIS was the 'trigger'!)

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!--  My neuros say...it COULD have

started....with the flu---which went to my "nervous system"...like an auto-immune disease...& damaged the nerves!  (This is what fibro is...right?)-

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 :-)

Posted 4/26/2010 7:51 PM (GMT 0)
Hi Robert,

The pain in your ribs could be costochondritis. That kind of goes along with the fibro. It can hurt really bad too.

As for sueing, I don't know. I guess if you feel that it is worth it, maybe so. But I am not a sueing type person and it wasn't anything life threatening. But that is totally up to you. If you feel that it will make you feel better or satisfied, well, I guess go for it.

I myself have not experienced myoclonus. I hope that I never do, but with fibromyalgia, you never know.

What is strange is that when I first come into fibromyalgia, I had a severe case of the flu too. It was so bad that I lost two teeth. Just all of a sudden, they became loose and I had to have them pulled. No warning no nothing. And I know that it came from that flu. It was a bad one. I never did recover from it I feel. And it has been nine years.

I hope that you feel better soon. Good luck with the lawsuit. Good luck with all.

Hugs, Karen
Posted 4/26/2010 9:58 PM (GMT 0)

Thanks, Karen--  For your kind and considerate post- wink

I had thought ofCostrocondritis...also-!  And..the fatigue! confused

Karen--the entire idea of bringing suit (aside from recovering some of the money I spent going back & forth to LA)---is just to let these Drs...know--that they cannot treat people like...trash! nono

You have NO idea---of the uncaring..."arrogance"..of not only two of their neuros---but also the "office manager"-!     skull   The entire idea...of my neuro not having enough compassion & empathy---to even make..."TEN MINUTES"....just to see me...& alleviate my fears---is galling to me! shakehead

And..the way,,,the office manager talked to my wife (who worked 43 years in a hospital as medical records supervisor)---by saying...when she said.."I'm concerned about my husband.....he is worried about these symptoms....and they are scary.."--& she had the unmitigated gall to say---

"The Dr. said--he should talk with a therapist!" shocked

AND...that same "woman"...(IF one could call her that---she was more like a 'witch'...really--& that's no hyperbole---)---When I called...pleading to see ANY of there neuros...!  Her response..."Robert...you can NOT keep calling...you are tying up the lines....for other patients!" eyes

Karen--it is...to me---a matter of "principal"--!  I will not ask for much money (small claims court)--just to 'recover' my airfare costs....AND a totally "Lost winter"...AND....my being "terrified"...for 6 weeks---before I could get to see another neuro-!

HOW--do you put a "price"...on mental anguish and worrying!?

The other hospital I went to--saw me...& were 'concerned'...enough...to order a battery of tests!

I wonder how...the first hospital....can or will "explain"...this away!?

Thanks again....for your response!   You are always "there"...for other people---too bad some Drs....do not have the same warmth as you do--kindest regards--Robert wink

 

Posted 4/26/2010 10:05 PM (GMT 0)
I am truly sorry that the doctors (neuros) were so uncaring. I can understand how you feel. It is as if they think they are some type of god or something. And to have the receptionist be so rude to you. That is totally unforgiving. I have run acrossed people like that and it makes me sick to see them be that way to so many people. It is as if they aren't even human.

I am glad that you got some answers with the second hospital. I am glad that they listened and were there to help put your mind at ease. That makes all the difference in the world.

I hope that you are feeling better now. Keep posting and keep us up to date on how things are going on.

Hugs, Karen
Posted 4/26/2010 10:34 PM (GMT 0)
Robert, I've had muscle twitches but no jerking movements.  The twitches can come and go.  And, stress doesn't help it one bit.   This had to be frightening to you and anxiety can do a lot to a body, too.  This possibly magnified your symptoms.  I know when I'm stressed out about something, I hurt a lot more and my muscles do weird things. 

 

I agree with Karen that you might have costochondritis.  I have that also.  Check out Fibro 101...the second thread on the forum.  There is a link all about costo there.  See if it fits you.  My doctor has me taking ibuprofen with food for that.

 

Lastly, I'm not one to sue, either.  Plus, you will probably lose because no damage was done to  you.  My husband complained of chest pains to our doctors for two years.  For two years they ordered stress tests and one echocardiogram.  Nothing showed so they didn't go with the extra testing.  He had a massive heart attack and died at 51 years of age.  I did not sue because doctors are human and can make mistakes.  Suing wouldn't bring my husband back and there was no malice in his care. 

 

So, quite frankly, since you were not harmed, I don't think it would go anywhere.  The first doctor obviously felt that anxiety was causing the problem and, according to what I just read about this illness, anxiety CAN be one of the causes!  The good news is, you found out how that practice operates and you went someplace else.  What if you had a dibilitating illness and were going to these doctors?  So, you have been blessed.  I think you need to forgive and move on.  You will feel much better in the long run.

 

Sherrine

Posted 4/26/2010 11:26 PM (GMT 0)
Hi Robert,

I experience myoclonus jerking and I have twitching too. The myoclonus jerking I experience, accurs in my arms, hands and my head. My head jerks really hard sometimes. It is very scary and feels like something is about to happen. I feel this feeling in my head right before it happens. I still have no clue what started this up in me. I noticed that it started after a high dose of antibiotics. Klonopin helps
the jerking a whole lot. It calms everything down. You may want to ask your neuro doctor for klonopin next time you see them. I'm sorry you are going through this. I know how scary it is.

I'm just thinking of this now....I noticed that the jerking will get worse when I am upset or excited. Is it the same for you?

I hope it gets better soon. Mine have seemed to finally calm down.
Posted 4/27/2010 3:54 AM (GMT 0)
Robert,
I don't know anything about myoclonus, but have a lot of pain and other weird stuff.

I can definitely relate to your anger over your treatment by the medical establishment. Having lost both my parents in a 4-month period - one to idiopathic pulmonary fibrosis, the other to a motor neuron disease (probably ALS), I still have an awful lot of rage myself, a year and a half later. That's not too strong a word. Trying to cushion their falls, and not having a lot of wherewithal with which to do it, was the hardest thing I hope to ever go through. I saw way too much of what goes on in nursing homes and the callousness of the whole system once they've got you inside, even the "nice" ones - and it's been hard to let it go. But slowly I am, because holding onto it only makes me hurt more, both physically & psychically. They can't hurt my parents anymore. But I'll never forget.

As far as sueing, I guess only you can decide if it's worth it. Hope you can get some peace.
Posted 4/27/2010 12:49 PM (GMT 0)
Lastly, I'm not one to sue, either.  Plus, you will probably lose because no damage was done to  you.  My husband complained of chest pains to our doctors for two years.  For two years they ordered stress tests and one echocardiogram.  Nothing showed so they didn't go with the extra testing.  He had a massive heart attack and died at 51 years of age.  I did not sue because doctors are human and can make mistakes.  Suing wouldn't bring my husband back and there was no malice in his care. 

 

So, quite frankly, since you were not harmed, I don't think it would go anywhere.  The first doctor obviously felt that anxiety was causing the problem and, according to what I just read about this illness, anxiety CAN be one of the causes!  The good news is, you found out how that practice operates and you went someplace else.  What if you had a dibilitating illness and were going to these doctors?  So, you have been blessed.  I think you need to forgive and move on.  You will feel much better in the long run.

 

Sherrine

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Dear Sherrine--

With all due respect to you, I take issue, when you say "Since you were not harmed"-!

And..."You will probably lose--because NO DAMAGE WAS DONE TO YOU"-!

Both of these comments are not true!

Have you ever heard of "Emotional Pain"?

When I was studying to be a "clinical psychologist" (I later changed majors to become a teacher)-

We were taught of ALL the types of abuse---"sexual"..."physical"...and "emotional"---"emotional abuse"--was "the most harmful"-!

What about the 'psychological pain" I suffered?

I was..."terrified"...with fear for close to 4 weeks----because my neuro..."assumed"--I was just being a hypochondriac!  She..."assumed"...there was no physical reality to my symptoms!

When I was in the ER---the chief ER Dr--who stopped in...(because he knew my wife from her 43 yrs at the hospital)---& SAW my myoclonus----was appalled at the other Dr---"ASSUMING"...it was nothing!   I will remember this past winter for the rest of my life!

He told me & my wife--"The first thing I teach my residents is...."NEVER ASSUME"...anything"-

When dealing with a poerson's health---a Dr--MUST see the patient!

YES...I was..."harmed"..-!   YES...."damage" WAS done!  

And---as far as the "anxiety"...?  No--anxiety is NOT a "cause"...for what I have!

My neurologist explained---Many people who come down with 'myoclonus"...or fasciculations---usually had an illness--preceding the "neuro"....symptoms...like the 'flu'-!

He explained that the flu virus--stimulates the immune system---& sometimes--the immune system...attacks the central nervous system---causing harm to the CNS---As he feels happened in my case!     Can anxiety...'exacerbate'...things?  Yes---!  But--it was NOT a cause! idea

I am taking this to "Small Claims Court"..----(as suggested by a good friend of mine who is an attorney)--Saying ---"just the fact that the second Neuro---ordered all of these tests---showed....that the first neuro was--showing....as he put it---"Malpractice thru neglect"-!

This is NOT a 'frivoulous'...suit!  I am NOT asking for any great amount of money--!  Just the cost of having to buy a new airline ticket---back from LA..to Philadelphia---($600)---

The "terrifying fear"...I felt worrying....as my body was jerking all over the place---that I had a serious "neurological disorder"-!   smhair The time frame...too--!

Think about worrying the results...of a medical tests...for one day?!  Imagine....a week--!   Then...FOUR weeks!

I am hoping the first hospital settles....via a mediator....over the phone---(even for say...$1,500)---JUST to let them know---they did something wrong!   (MY present neuro--KNOWS the chief neuro at the other hospital....& he told me---The chief neuro KNOWS.....his other neuro....did not do the right thing!  And...Drs.....very rarely say this about other Drs---!

This was...egregious! shakehead     How they treated me!   And...you say...I..."was not harmed"!

True--NO "physical harm"....was done---but what about "emotional"-?  (Remember that poor young girl...who recently commited suicide....because of being...."emotionally harrassed"...by other students?

Did the other students.."physically"...harm her?  No---but..."emotional trauma"...YES!

EVEN ...IF....I lose---that's OK---(Which I will NOT)--Because I will have made this Dr--and/or that unfeeling....cold hearted "office manager'...take time out...to have to come over to the "small claims"...court!

That's it-!  I was NOT going to respond to your post--but----It just really made me "stew"-!

I just had to get this out---!

btw---I was just yesterday,...."accepted"...to be seen by Mayo Clinic!   wink

 They do NOT "accept"...patients----who do not have anything wrong with them!   IF...Mayo Clinic.....feels I have cause to be seen--surely--this ordinary neurologist should have...and COULD have taken out 5 minutes of her time--to...at least---SEE me! 

Hoping I made my position clearer!    smilewinkgrin Robert

Posted 4/27/2010 4:02 PM (GMT 0)
Dear Robert,

My question to you is....why would you post such a lengthy rant asking for feedback if you only want to hear "feedback" in support of your position? I'm sure there is not really near enough information provided to give a clear picture of the situation anyway. For example...how much of a history do you have with "your" doctor? Does he/she have a history of your condition that led him/her to come to the conclusion that they did? A conclusion that I might also point out was CORRECT without using resources that might better have served someone else? I'm sure that your fear (or what your doctor termed anxiety) was very real but in my opinion I can't see a lawsuit getting you anywhere other than like you said, making them take a day off to come to court. So if you want to waste your time and money and emotional stress on a lawsuit that is your prerogative but to bash Sherrine for simply giving you the feedback you asked for was RUDE!
Posted 4/27/2010 4:25 PM (GMT 0)
Robert, when I was searching yesterday, anxiety was listed an a possible cause.  That's why I said it can be a cause...not that it was what caused your problem.  I'm not a doctor.  I was just answering your long post because you asked for people's input.

 

So, you made yourself perfectly clear.  You had your mind made up when you posted because if anyone said anything against your thinking, you came back at them.  I gave my opinion because you asked and I did spend a lot of time on  your post.  My opinion is my opinion.  Please don't ask for it if you don't want it.

 

I'm sorry you are going through this and I'm sure you will get some help with it.  I wish you the best of luck.

 

Sherrine

Posted 4/27/2010 5:18 PM (GMT 0)
Robert, I'm sorry you had such a hard time. It's a pretty common denominator around here: most of us see doctor after doctor before we are finally correctly diagnosed with many of our illnesses. I wish you the best in finding treatment and peace.

Sherrine, I'm so sorry about your husband. The same thing happened to my brother-in-law's brother. All initial tests showed up negative, indicating no need for additional testing, and he died of a massive heart attack within the month. He was only 42. Humans, of course, are imperfect, and our medical system, as advanced as it is, is imperfect, too. Hugs to you, Sherrine. Thanks for sharing something so personal.

Austen
Posted 4/27/2010 7:54 PM (GMT 0)
---IT'S ALL SETTLED-- smilewinkgrin

Hi there--

Just to let you know---to Sherrine...& others--

In case I failed to make myself clear--

No--I was not or am not angry with Sherinne---!

If I showed any "frustration"...it was that which I felt towards the first Hospital & their neuro-

Anyway--just returned home.....after meeting with the "Chief Neurologist"...of the fitst hospital--where we discussed my case---& reached  an agreement-!  wink    (This must be done FIRST--before any "small claim's court" case is scheduled)

He was very nice-!   I showed him all of my tests...that were done by the second neuro--

(TWO MRI's...cervical spine & brain--)--an EMG..and an EEG---& blood tests for thyroid!

He agreed that the neuro SHOULD have seen me....with the symptoms I was describing!

He also--felt that...these  tests should have been done by her!

This was to "rule out"...other...more serious "motor neuron"...diseases...(ALS....etc)---

This neuro apologized to me---& told me he spoke to both the neuro AND the office manager!

He, too, told me---that in his years as a Dr...and teacher in a "teaching Hospital"--he always stresses to his "resident Drs"...that NEVER to..."assume"...anything!    If in doubt--SEE the patient---err on the side of caution-!  

He also saw my letter I just received that I was accepted to be evaluated...by Mayo Clinic...in Rochester Minn--!    This is the #1 neurology hospital in the nation-!  They do not just accept anyone....& must see enough "medical documentation'...to justify it!

I showed him the credit card statement---with the $600...fee for my flight back...from LA....when my symptoms worsened---& I became concerned!    Also--the $300 I paid for the "Writers Seminar"...that I did not go to--& lost the money!

He told me---he spoke with the 'legal dept'---& they would write me out a check for....$900....& I must sign a 'release'...form--! ( I should receive both in the mail...in the next 10 days! ) 

We shook hands...smiled.... :-) ...& both left satisfied!  It was a fair & reasonable agreement--

That's it--or...as "Bugs Bunny"...would say..."That's All, Folks-!

That is ALL I wanted!   An apology....& a reimbursment....of the money I spent--that would NOT have---had...hospital...#1...did what they should have...from Day-one!

I hope this post....answers any questions...my original post may not have-!

I just wanted to do---the right thing!  No lawyers--no court---just two people reaching an agreement-! :-)       Hope this clarifies things---regards---Robert

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