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Posted 1/13/2010 12:45 AM (GMT 0)
Dear people here at HW-

As you may or may not know--last 2 months- been having really ...'scary'....Neuro symptoms!

First---started out as merely--"pre sleep" jerks...no problens!

Then--rt before sleep....felt like a  mild"shock like"....feelings in head & down thru body (for split second or two)--

Now...for last 6 weeks.....been getting "Myoclonic" shock like spasms in my arms,....shoulders...trunk ...neck....etc----

Been to my neuro--who . ....specializes in..."movement disoders".....---

 

--Had 2 MRIs of brain...in last 3 yrs---normal-!

--Two  weeks ago ....eeg ................normal- !

 

She says....it's all due to ....anxiety!   I just do not believe her,....(as much as i would)---

 

I mean...constant....muscle spasms....and fasiculations...of rt shoulder,.....then left shoulder...strong contractions!    Then...I can feel in rt...and left bicep.......slight muscle fasiculations------then...cervical area!

 

Today.......felt muscle contractions down...left arm.....went to my hand..and for 2 or 3 seconds...my hand went into a fist---until....spasm subsided!

 

Only thing that seems to help.....is Valium----

 

Anyway-----after leaving her messages,,,.....She called me last nite..and tho she does NOT feel...I need it----to give me "peace of mind"...set me up for an EMG..... for next Tues(see my other post in another forum)-----

 

People----#1) I scared...I have some kind of "Motor neuron disorder"....like.....ALS......(Gehrig's disease)-I do NOT have any muscle weakness!--my neuro....assures me...I do NOT have this!  (have had  a few neuro exams)----

 

Trust me...she is very good...&  i do like her very much---she is attentive ...caring and listens well---!    When she called last nite...(about 4 PM)----she was making hospital rounds..-  my wife answered---(i was in bathroom)---wife told here----strange symtoms...continued...AND.....was also concerned about the stress....and anxiety this was causing me!    My neuro ask...If i had a psych Dr-!  (I do)---

 

I got on the phone.......she told me...she "got"...me in for an emg.....for next Tues!  THEN...........again...reassured me....i do not have ANY "motor neuron disease"...!   She feels it is all due to stress!   i'm...HOPING she is correct!

 

I looked up on internet.....a disorder that ":sounds"...like what i'm experiencing.....it's called..."Myoclonic Dystonia"------and mentions symptoms...almost to a "T".......including myoclonus..in upper body...arms...neck...etc----and says it is not serious...and people with it do have anxiety disorders....depression....OCD.......---has anyone heard of this? 

 

Anyway--that's it---!  That "thing"...today...where my hand curled up--really scared me!  I ask.....is there anyone out there with anything...similar to what i am experiencing!    I'm fearful of hat the emg.....might find!   Crazy thing is...even if that is OK---what could be causing this?

 

This is the most fear..............I have ever had...in my life!  please---someone.....or more get back!   anyone with  similar symptoms....would help greatly----knowing i'm not alone!

 

I'm considering going to Mayo clinic...if they accept me!   Please--get back---Robert            

Posted 1/13/2010 3:43 AM (GMT 0)
Hi there i do get some of the sx you are talking about but not all... the muscle spasms in legs and shoulers are horrid..i have neuropathy i got that soon after waking fro life support when hospitalized awhile back..cait had come home from work found me in a seizure from there i was in hospital some time..i have no feeling in my feet or rather they fee like they are in ice all the time..numb i am starting to get stronger vut it still has me scared like you..my dov told cait..as i am now totally deaf..that i am responding to all the losses in last few yrs mom dad son yrs ago hubby .....there are definite reasons and not life threatening why this can be happening and yes i believe anxiety has so so much to do with it for me anyways..wotan i hv known u on the boards since i joined and i DO believe you are terrified..try thinking positive friend i doubt it is anything life threatening and possiblibly meds could help i am on valium and for me they do help.....i hope i hv helped you in some small way n know my thoughts n prayers are with you ..keep us posted and try to stay positive..i know easier said than done i really do but i am sure this will be something that can be taken care of......stay strong..huggles..lyn

Anxiety can really do a number on you believe me i hv lived with it for over 40 yrs......

Posted 1/13/2010 3:47 AM (GMT 0)
AND no you are not alone...
Posted 1/13/2010 4:03 AM (GMT 0)
Just to reassure you my best friend who also suffers from anxiety has a similiar experience with her hands. Out of the blue her hand..usually one at a time will just curl up and be really tight. She is unable to move it at all. She says it's like the worst muscle spasm ever.

Get the rest of your tests done for piece of mind. It's good that you have a caring doctor. If you are comfortable with her try to trust her. I know that is easier said then done.

Also, stop googling your symptoms. I have just recently stopped. Every symptom of any disease can have similiar symptoms to anxiety.

We only hurt ourselves by researching. The only thing I look up now is anxiety symptoms.

Do continue with your doctor though. One good thing is that your valium relieves it.

Peace to you....kitkat
Posted 1/13/2010 4:12 AM (GMT 0)
I suffer myself from depression and anxiety/panic. Sometimes I just can't fall asleep and I can have nightmares. I take Xanax myself and I have a sleeping pill if I need one. Hang in there, and follow through with your neurologist....and if he doesn't help, find a psychiatrist who can possibly help you even more.

Take good care of yourself, and try to listen to soft music and close your eyes to relax. It does help.
Posted 1/13/2010 2:15 PM (GMT 0)

I have had nearly every symptom you mentioned, at one time or another.  Every test came back normal, yet I continued to Google these disturbing symptoms, convinced this could not be my fibro/anxiety issues.  Please trust your doctor and...DO NOT GOOGLE!  I dx'd myself with everything from ALS to mad cow disease  (OMG...Denny Crane).  These websites hone in on the worst case scenario every time and that's what we focus on.  You are not alone!

Donna

Posted 1/13/2010 2:16 PM (GMT 0)
Wotan first off take a DEEP breath. I think that its VERY possible that this is all anxiety. I have a daughter who can't move her left arm right now, she has had every possible test ran, and nothing is showing up. My daughter is currently out of work, living away from her son, so although she doesn't want to admit it, she is stressed. And I think thats whats going on with you too. I hope that if this test comes back normal just like the rest have, that you will consider getting in with your psych and working on this anxiety. Good luck!
Posted 1/13/2010 4:13 PM (GMT 0)
hoping you come back n read input wotan..lyn
Posted 1/13/2010 8:51 PM (GMT 0)
Hi Lyn-Nanners, Donna, Janet S, & Kitkat---

I want to than ALL of you for your kind....thoughtful, caring & very helpful posts!smile

They really did help me thru the nite last nite---& again, your advice is well taken (Like my wife said--"stay away from 'google")....any symptoms---!  Some of those people who write them things must be sadists!smhair

Anyway--I need sleep...very badly!   Not sleeping adds to anxiety, etc-shakehead ---ONE more favor--

My pdoc called & wrote me an Rx.,...for Lunesta (3mg)----just to get me a few good nite's sleep!

(I was thinking about breaking the pill in half.,..to 1.5 mg)--Just a thought-  My "favor" is **

---..I'd LUV to hear some good...nice things about Lunesta! smilewinkgrin   (I ALWAYS worry when taking a new med!)

 (OK...if the only bad thing is a bad taste in my mouth---i'll take it for a good nite sleep!    A bottle of Scope & a toothbrush & toothpaste.....can remedy that!

Take care---& God bless you all--regards---Robert..(I don't know how I got that goofy nickname..."Wotan".....I think when I was a kid...I dressed up for Halloween..as .."Wotan"....a Norse God....out of one of those operas!  idea     Thanks again....Robertwink  

Posted 1/13/2010 9:00 PM (GMT 0)
I have never taken Lunesta but I have a few friends who do and they swear by it, other than the bad taste the next morning. Good luck and I hope you get some rest.
Posted 1/14/2010 5:03 PM (GMT 0)
you sound a bit like me, I used to google things and it just makes me a whole lot worse, i convince myself i have some horrible disease that is going to take me from my children and the more worked up i get the more symptoms i seem to get, its a vicious cycle :(

sending hugs x x x x I know exactly how you are feeling as im feeling the same, and its a very dark place to be x
Posted 1/14/2010 5:51 PM (GMT 0)
AN ANSWER TO ALL OF THIS MAY BE IMMINENT-!

Dear Friends at HW----

A large part of these strange neuro symptoms  (Myoclonic muscle jerks- spams--etc) is the UNKNOWN-!smhair

After getting my botox injections for my 'hemifacial spasm' my neuro (who I DO like)-- kinda 'shrugged off"......these symptomns as due to "anxiety"...& "Stress"--nono &.............. i KNEW...it was not-!    The SAME muscle groups were involved...(Trapezius...shoulder---spasms going down should to arms to my hands!)--Spasms in my... NECK muscles.....terrible!

I was BEGGING her----to give me....an EMG....AND an MRI of cervical neck area-!  She kept dismissing it---!   I was getting upset that she felt it was "Stress & anxiety".....& I KNEW...it was not--I just wanted it checked out and NOT be...IGNORED! confused 

  I've noticed...w most Drs...when they have someting in their heads...they are reluctant to "step back"...& re-evaluate!  (Is it pride?  I don't know)--She eventually..."relented"...& scheduled an EMG..for Tues...just to "placate"..me!

I SAY this 'cause...NOW....it is becoming more & more apparent....that these things are NOT..."anxiety" related---

#1) The TYPE of myoclonus they are.(Same muscle groups day in...& day out--that is NOT "anxiety")....AND...

#2) They MOSTLY occur ONLY when I am LAYING DOWN--!     When I am up & moving around....they go away!       

**This is highly indicative to a compressed nerve in the neck----!    I FELT it...in my gut...& knew it!

Anyway....Yesterday AM...I CALLED up one of the TOP NEURO Drs....in Philly---(at a different hospital than my "movement disorder" Drs....)---   He is the one i spoke with after my EEG....(ruled out any epilepsy)-!---So--I talk w his secretary who makles appts....& she is such a sweet...kind...caring young lady!         Told her...how I was on West Coast...for ONE day..........& flew back....symptoms were so bad......I could not sleep---!   Only to be told....by my other neuro..."It's just anxiety".....(And.."You can't keep calling the office!")-

This secretary was so kind....she told me she would tell the Dr-----

So...LAST NITE........my phone rings...& it IS THE NEURO HIMSELF....just finishing his hospital rounds!

I tell him...of symptoms...(& he knows other neuro)---asked me what she said!  I told him straigt up---"Dr---she says "anxiety"...& her mind is made up....because she knows I AM an anxious type!   He said nothing----- but asked about symptoms----told him of it occuring only when laying down....or sitting-------i told him...WHAT muscles were involved!   He just listened---GREAT!   Then...I said...I am getting an EMG......but I feel it might be related....to a "nerve compression'...in neck-!   He said,,,"Hhmmm"....Like he was INTENTLY listening...to ...ME....!   And he is a reknowned neuro-!

Such a nice man!   He tells me soonest he can see me is Tuesday........& to call his sec--& he would notify her----to expect my call---!   Told me not to worry--probably nothing serious.......  & I MAY be "onto something"....with the nerve thing...BUT..said.."Let's wait till Tuesday....we'll get to the bottom of this!"   This AM (Thurs)--I just called his nice sec...& she already was notified by the Dr...& had me in for before noon...after my EMG....at another hospital...(close by)--

People----his kindness in taking the time to call---his listening.........his reassurance----are ...along with his great reputation...make him ...to me....an exceptional Physician!  I KNEW.....at this point----ANY neuro issues..I had,,in the future..............I'd go to him!

Last nite...I experimented---!     At bedtime...i did NOT lay flat---but sat up w 2 pillows....& read...!

NO SPASMS....!   I took my Benadryl.....2 hrs earlier...& my 5 mg...Valium...30 mins...earlier!

I read...till I was sleepy....THEN...fell asleep----!   No spasms!    My neck....nerve compression theory,...was  "holding up".....ALSO--I did feel.."calmer"....& more "secure"...KNOWING.....I FINALLY had an appt with a neurologist......who was not only excellent--but---was willing to look at my situation with a "New eye"....confident.,.....that we would..."Get to the bottom of this!"...Those words....were honey to my ears....& a balm to my tortured soul!

It is such a "blessing".....yo have a Dr. who is not only excellent...but...caring..& shows compassion....!

Believe me.......................I was trying to find another neuro----& it's rare to even get a secretary to call back.....within 3 days for an appt--!  Here....The Dr. himself...called me back...the same day-!

I told my wife..."Tueday can NOT come fast enough!".....Get my EMG...AND see this wonderful Dr--(Not sure if he'll want a cervical MRI or not---we'll see)----wink

At least now...I KNOW..............My situation is being taken care of.....& I do not feel..."Left out to dry"....like I did before he called! 

Wish more Drs....would listen more to us....& not dismiss us......as "Hypochondrial" nuts! turn (I KNOW...I am somewhat hypochoondrial---BUT......a Dr. should still...put this aside..& listen!)

Get back---I feel really relieved!   Any similar stories?  Regards...& thanks again to ALL of you who have comforthed me---Robertwink

Posted 1/21/2010 9:40 PM (GMT 0)

Hi Everyone--

WELL--took my EMG Tues am. early--Neuro Dr. gave me the report (Since I'm leaving for LA Tues morning)--Everything "Normal"-!    That was great!     We (my wife came with me) by 8 AM...tested at 8:15 AM...out by 8:45 (Nerve conduction test as well)--

THEN over ...had 11 AM....appt with the chief Neurologist at the hospital-(here in Philly)--

He was SO NICE....caring...empathetic..understanding-!

He actually saw one of my "muscle spasms"...in back, as I was laying back--& felt it with his hand--!

Then--he had me stand up facing wall--looked at my back---Saw it was 'normal'...(no fasiculations)-

He sat had me sit down--Went over all my tests..(all normal)-- EEG....EMG...MRI....

Said...what I experienced was certainly "bothersome"...BUT,.....realize there is NO disease there!

Told me NOT to worry--relax...meditate.....& realize I am one of those rare people who get these often---(While SOME people...get them..maybe once or twice a year!)

People--I felt SO relieved knowing--

1) ALL my tests were normal...and

2) This very good, highly esteemed neurologist....assured me everything was OK---& this would NOT hurt me!   Told me to maybe increase my Valium a little...& start the busbar (my other Dr. had presribed...but I had not taken)--basically---he was telling me....Drs...do NOT know "why"...these things happen,..BUT   

1) They are not serious

2) They are brought on by...STRESS!

I thanked him.....& later that nite.....slept well--!

That nite I had taken.......a Benadryl...& Valium later....but--have not started my Busbar yet!

(Other Dr. had prescribed....starting with ONE a day....for first week----TWO a day,....second week....& THREE a day,,,,....third week.,....!   Then ...3 a day--he says it takes a week or two to..."kick in"...!

Funny...how...............Just KNOWING.........Dr. reassured me...I felt so much more relaxed....& have slept well--last 2 nites!:-) get back & thanks to....ALL of you---regards---Robertwink  

Posted 1/22/2010 12:19 AM (GMT 0)
Dear Wotan,


Glad to read your report and please just try the Buspar. I take it and I have Major Depressive Disorder and Anxiety. Trust me and give it a fair trial. If your willing to take Lunesta, Bendryl and Valium, why not try the Buspar which is not addicting and may be the one med that will help lower your anxiety.



JMHO. I know your head is spinning but try hard to stay in the moment and know we all support you.



Gentle Hugs



Kitt
Posted 1/26/2010 2:30 AM (GMT 0)
very happy for you and i am plzed there is other docs out there that do listen n hv empathy..i hv no clue where i would be right now w/o my family doc i talk to him about everything he has asked me how some specialists he has sent me too are and i am totally truthful with him 9/10 they act like i am taking up their time for no good reason..you can see it in the body language imho,,,i too hv a fantastic neuro so i am so happy for you and sure glad you are sleeping better..keep us posted..lyn...oh btw totally agree to give buspar a shot..
Posted 1/31/2010 1:33 AM (GMT 0)
I can DEFINITELY provide you some relief and insight. I too suffered from fasculations/twitches and was SO SCARED and TERRIFIED I was developing ALS. So terrified that I couldnt sleep for a week and was ill and literally going out my mind for a few months. LEt me tell you something. It is a symptom of ANXIETY. Futhermore, there is another forum called BFS(bengin fasculations syndrom) that can really help you and ease your mind.

Now normally a person who develops ALS will have muscle weakeness first then as the muscle dies fasculations will come. Yes some developed fasculations first but it is not the norm. Wide spread fasculations normally is BFS or anxiety. Now dont freak out because you can have hot spots where it will twitch in one area for a period of time then move to another area.

Normally within a few months you would have showed muscles wasting and weakness if you have ALS. I was so freaked out! This has been happening on and off for the last three years. My medications have helped me to get it under control but I get the occasional twitch. Like today I had a few twitches but that is not abnormal. Before going on my meds I woud have twitches everywhere! One time I was so crazy freaked because there was a large twitch in my buttock and it caused that area pain! Imagine where my mind was!!!!


Oh I empathize with you so much! SO MUCH! I would crawl up in a ball and just cry and cry and cry.

STAY OFF THE INTERNET! DO NOT SYMPTOM SEARCH! It will drive you crazy! That is how I found out about ALS symptoms. You are not alone trust me. Look up anxiety symptoms and BFS(begnin fasculation forum to get yourself some relief). Futhermore, although anyone can get it, its a rare disease with about 5000-6000 newly diagnosed cases in the US, at least per year. Most over the age 40. Although you could get it at any age.

Get on some medications, and calm down. Look at my comment over and over again if needed so you know that I went through the EXACT thing you did.
God bless and know that it is anxiety not ALS.
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