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Multiple Sclerosis Community
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220917 tn?1309788081

ESR, Medrol dose pack, Provigil and HUGE apology!

Boy, I have been peeking around lately and notice so many new names.  As a Purple Flower member, I should be ashamed, and am.

Welcome to all who have made a new home here.  I hope it has become the haven for you that it has been so long for me.

My 'unexcused absence' has a few reasons, if not excuses behind it.  I apologize.  I have been adjusting to a new wonderful but demanding job.  The training period requires testing and quizzes and also that I get up at an ungodly 3:45 a.m., which I have not been accustomed to.  Now, I am getting to like getting home by 2:30 p.m., so I can pick up my youngest boys from school, and hear all about their days, while they are still excited or upset about them.

The job also was full time, 40 hours until this week.  I had the first two days off of this week, but have been in the throes of a new relapse.  Big time.  Up until now, I have been struggling with fatigue, but it was not until last Thursday that a flip was switched and I knew that old feeling of drop dead fatigue.  Still being in the probationary period of my new job, and with having new insurance, I have been feeling pretty panicky, quite sure that I was going to have an acute episode again.  For those that know me....I felt "a complex migraine coming on!"

With no relief by yesterday, I gave in and called my neuro, who after releasing me from the last hospital stay diagnosed me with 'complex migraines,' only to discover he didn't have an opening until DECEMBER.  I told his office worker that I felt the SAME way I did last May when I ended up in the hospital unable to walk.  She asked, DO YOU HAVE MS?"  No, I said.  "Complex migraines."  It came out a whisper.  She would call me back.  Miraculously, someone had canceled for Wednesday (today) and he could see me, but I couldn't be late!  I promised, and already started to dread going in.

Anyway, he examined me today, and indeed both my legs were weak, left greater than right.  he asked if I had a headache.  No.  He wiggled my toes in different directions to see if I could feel which way they were pointing: up or down.  On the left, I had a difficult time.  He had to really push hard for me to feel.  He did the pinprick test all over my body.  I could feel the touch, but not the "sharp" on my left side.  Almost nowhere.  On the right, I couldn't feel it on my foot.  But everywhere else I could feel it.  He stroked a tissue in different spots.  EVEN my EYEBALLS.  My left eyeball is sometimes numb.  

I then told him about my extreme fatigue, and asked him if that could be attributed to migraines.  He looked me in the eyes and said, NO.  He said, the nerve is inflamed for some reason.  He was going to put me on Medrol dose pack so I hopefully wouldn't get an acute attack with my new job.  He said to call him next week if I didn't feel better, but he's sure I won't call, because I WILL feel better.  (Who doesn't feel better on steroids?)

He then went through ALL the tests I've ever had done.  Every page of my chart.  He said, Your spinal tap was NORMAL?  Yes.  The protein was a little high.  Yes, it was.  He went through some other tests.   This was NORMAL?  Yes...  He asked me to walk.  He said he wanted to look at my back.  It looked fine.

He asked if I was dizzy or had vertigo.  I said I was very dizzy, and felt very off at work, but no vertigo.  

He said the only thing he wanted to do was to run an ESR to check for inflammation, because that hadn't been done in a while (I know they did it in the hospital, but it's possible he didn't have it in the chart in front of him).  He said to call on Friday for the results, to take the Steroids, and offered Provigil for fatigue.  4 months worth.  Until I'm to see him again, unless I don't feel well by next week -- which, of course, I will.

Am I getting closer?

Love to all whom I miss SOOO very much.  And a HUGE apology for being gone for so long.  No good excuses.

Momzilla*
35 Responses
Avatar universal
Just did my heart good to see your name posted again.  I've missed you sooooo much!!!

Hope the meds work and you get through til the next appt.  

Sounds like the neuro may be doubting himself?  Would he ever admit to being wrong?  We can hope so!!

Love ya, zil, glad you're back!!!!

Hugs
doni
559187 tn?1330786456
Zilla's back!!!!!  

We missed you, but understand that the new job was probably keeping you very busy.  Is is disheartening that your symptoms are back.  Has the Medrol Dospak helped you in the past?  I'll keep my fingers crossed that that it gives you relief.  

Take care of yourself and keep us updated on how you are feeling.

Julie
488264 tn?1226523907
missed my hugs:(((

Glad you're back.  Are you a breakfast television game show host or something?  Trying to think what job involves getting up early morning and learning quizzes.  Sounds more like my typical night of insomnia.

Don't let neuro's put cotton wool/tissue on your eyeballs, very unhygeinic...

There's going to be a problem unravelling all these symptoms from the stress of the new job.  When was your last mri?

Get all your results in, make sure they've checked cortisol and acetylcholine along with all the others.  Cortisol to see just how your adrenal glands are coping with the stress, in an ideal world a 24 hour urine test but early morning blood plasma will do; acetylcholine to see if there is any muscle problem causing the fatige eg. myasthenia gravis. ..Trying to psych myself up for working as a twerp in a white coat next week.  They're locking me away in imaging, where I can't interact too much with anybody, the medical equivalent of IT.  Bored before I've even started, and may be there for three years, or three weeks once occupational health gets round to reading my file.  When they throw me out I'm going to become a medical lawyer, and strike off everybody on the bad doctor list on this forum, just send'em my way.  Who said I was bitter?

I needed so many cuddles in recent months and YOU WEREN'T THERE.  Now what sort of a Momzilla is that huh?  There's a lot of us here needing comfort so get your mommy mode going.

Want to give you all my good news, but you'll have to wait, it hasn't happened yet.  Can give you heaps of grumpiness though.

Now do I have to dig up all the research literature on shift work, if that's what you're doing, and the damage it wreaks on the body?  Can't you change to better hours?  

I hope you get your answers soon, and evern better make a spontaneous recovery!  Wish that for everybody.

Trying to decide whether to sleep or tidy flat, long job.  Occupational therapist visiting tomorrow to assess how pathetic I am.  Just need to be pathetic enough to qualify for a new home and to add weight to my disability applicatoin.  Will bang on about access and the tiny bathroom etc.  Just being a slob isn't good enough a reason.

Will sleep.

Fighting with neurologist, the good one.  What a relief, he had me worried my cynicism was misplaced, all is right in my world.  

Just found our I had an inflamed optic nerve which was not reported on, then I was asked why I didn't come in as an emergency.   I DID.  THEY MISSED IT.  HOW'S THAT MY FAULT?  

Fighting with harrasser who works here.  

Fighting with phone company, they're cutting me off in a few days, as a birthday present.  

Fighting to get my name cleared from malicious old GP.  Meeitng in a few weeks with the powers that be.  Suspect it's some 10 year old or something, usually they get the most responisble life altering positions.

Fighting with my pills.  Should they stay or should they go?  If they stay there will, be trouble, if they go it will be double...Who sung that?

Fightying with my GP.

Can't even remember the other fights, best to assume everyone is an enemy, probably right in most cases.  

This is what happens when I stop getting cuddles, look what you done!

Am glad your home and this time you have to stay.  I will be around less if they cut me off but there's always internet cafes

PM me anytime, love seeing numbers in the inbox.  Hire a babysitter to help with your 350 kids, was it?  A lot anyway.  And try not to work too hard.

love

wish
Avatar universal
Welcome back...You take all the time you need for yourself.  We understand - there is life outside of this forum, thank God!

It sounds as if your doc may be rethinking his initial thoughts...which is great.  And, at least he is willing to treat you (prednisone and provigil) which most docs wont do without an official Dx.  You could be on your way!!  I love how you said, "Can this be from migraines?" (knowing that they couldnt and you KNEW that)  and he said "NO".  Now, I think if you said, "Well, Ive been doing research and I KNOW that migraines dont cause this...."  , he would have had a different reply.  We get so much further when we approach the docs not as pushovers, but not as too much of know it alls, either.  And who cares if we have to fluff their ego a little bit?  All that matters is getting Dxd and treated!!  In the end, thats all that matters - getting well.  Alot of people spend so much time bashing heads with their docs, that they only do themselves a disservice.  The doc is going home, very rich and happy, regardledss of what we say or do to them. What is the point of "getting them back" or getting the "upper hand" with them, if it doesnt help us get better in the long run.   I think your approach was excellent, and it appears to have gotten him to relook at his original findings.
I hope this is the beginning of something really good for you...I know you help alot of us here, and you deserve the same...
Good luck and let us know what happens...
Love Lauri
335728 tn?1331418012
Hey girl...we missed ya and I am so happy that you are enjoying your new job!  There are a whole lot of new people but we have gotten by with working together.  Sorry to hear you are having trouble again but I sure hope he gets it right this time and you don't end up in hospital again...please keep us updated as to what is happening with you ok?  Even if you don't give us the full rundown it's important just to pop in and say "I'm Ok, I'm Alive, I'm Workin' Hard, I'm Gonna be Baaaack!  hehe

Lots of Hugs,

Rena
Avatar universal
Welcome back!   Although, being a newbie, I did not know that you were MIA!

It sounds like the neuro may be wising up.   I sure hope so!

Richard
OperaMBA
486038 tn?1300066967
YAYAYA!!! I'm glad to see that you are back, doing ok on the job and that FINALLY that neuro decided to look further than those "complex migraines".... you hang in there, ok?
We are here for ya!!
(((((((hugs)))))))
~Sunnytoday~
Avatar universal
I am new here and I don't know you,  but I admire anyone who can have the symptoms you have and get up at 3:45.  You DO know that's the middle of the night, right????  

Good luck with the treatment.  I'm willing to bet the Neuro is taking your second episode quite seriously (as well he should).  Ah, such a fine moment when the light bulb goes on in a Neurologists head!!!

Sally
220917 tn?1309788081
WOW!

It's so nice to hear from so many newbies who don't even know me!!  What a great bunch!  I look forward to getting to know thee.  And, oh, that it was only my 2nd episode!  These neuros can take a long time to convert, we do know that!  I have had signs of trouble for a very long time, but not one lesion, I'm afraid.  Hyper reflexes that mean complex migraines don't paint the whole picture.  (And I rarely get headaches.)  

Belated welcome, welcome to you all, and I look forward to chatting you all up!  I am sure to have a date with my sofa when I get back from getting my blood drawn after work today, then homework and dinner with the kids, then more sofa.  But promise to do my best to get back to life on the forum once the steroids kick in!

Oldies~~ Thanks for your notes.  Miss you all.  You've all been such an integral part of my life for so long, my lifeline.  I'm so sorry I've not been here for you.

Love to all.  Feel well.

Stinky Toes*
198419 tn?1360245956
STINKY TWINKLE TOES!!!!!!!

Are my eyes failing me? Is it really you?

Mama Z you have been missed so much! I wish you were not in this flare for your body and your new job's sake, however, maybe it's happening for a reason, the chance appointment - your words to him -  his words to you -  the course of meds etc.

Don't overdue it girl, and do what you can.  Seeing your post this morning was like a huge breath of the freshest air!  Looking forward to seeing you around more when you get released (from probation...lol).  Hope those steroids serve you well, and I'm just guessing, but you aren't starting the Prov and the Steroids all at once are you? Lordy, that would be too much even for Super Z's like yourself.

Love you Gal - Welcome Home! Pretend I baked you some homemade chocolate chip cookies or something! Can you smell them?
xoxox
-Shell
Avatar universal
Z,

GLAD YOU WENT TO THE DR. AFTER WE TALKED,YOU SEEMED RELUCTANT

TO GO.

YES,IT SEEMS YOU MAY BE GETTING SOME WHERE.

THE PROVIGIL HAS HELPED ME GREATLY.

HATE TO MAKE THIS SHORT BUT GOTTA RUN (QUIT LAUGHING) JUST A FIGURE

OF SPEECH.

LOST YOUR NUMBER,DANG VISION,OPTICAL NEURITIS FLARING -UPAND I

DELETED HAVE THE STUFF INMY PHONE.

OH I HAVE SLOWED DOWN SOME AFTER OUR TALK,I CALLED OFF WORK THE

LAST 2 DAYS,THEY AIN'T HAPPY,BUT GOTTA SEE.

HOPE THE MEDS HELP,SOMETIMES WHAT MAY SEEM LIKE A FLAIR-UP,

SOMETIMES PASSES BY ,BUT GLAD YA GOT SOME MEDICAL HELP,INSTEAD

OF WAITING.

GOOD TO SEE YA BACK ( I KNOW I'VE BEEN MISSING IN ACTION)

T-LYNN
567489 tn?1297254314
Welcome back and way to go at that neuro appt!  Sounds like you had the right approach, not too know-it-all, but still asking questions.  I bet you are indeed close to a diagnosis.  Wishing you all the best with everything - new job, kids, symptoms, new drugs... you have a plateful!

Hugs,
Jennie
dxd 8/4/08,copaxone
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