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*

[doni54]

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

[Sarahsmom46]

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

[wishforchange]

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

[Lauri8967]

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

[Rena705]

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

[OperaMBA]

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

[Sunnytoday]

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~

[Salamander2]

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

[Momzilla]

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*

[sllowe]

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

[young at heart]

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

[JENNIEO]

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

[Quixotic1]

Our would-be ballerina is back!!!  Oh, dear, heart!  Good to see you.  I thought you were a gonner for sure.  Sounds like the most intense job training/orientation imaginable!  I'm glad it's over and not surprised that it seems to have brought on a relapse.

Your doc is rethinking things.  The persistently negative MRI and LP do confound the picture, but, eventually something will point the way.  The ESR is a good idea.  The steroids will likely improve things but they won't point any particular direction.  Yay, for Provigil!  The steroids and that will get you through your job.

Maybe this neuro is capable of thinking "atypical."  We can certainly hope so.  We look for you to be back with us when you can.  I have been completely gone, too, so Shelly has been carrying the load of the Purple Flowers.  Everyone seems to have pitched in fabulously.

We'll all get through this with a little help from our friends.

Take care, post a little when you can.

Quixster

[Momzilla]

I've missed you madly!

Now I hear you've been busy with testing and such.  I hope it went well.  Will chat with you lator, Gator.

I was just going to post that I'm getting impatient with the steroids.  Was wondering how long they take to kick in?  Now, I know you prob won't see this, but someone else might...

My weakness IS actually improving today in my legs.  Not completely, but markedly.  The paresthesias are not better at all and seem to be even worse.  My left eyeball is numb all the time now, and the left side of my tongue is joining in the fun.

When I woke up this morning, the first thing I noticed was that it felt as if the left side of my face was glued to my skull, I guess.  And my cheek and eye felt droopy.  I got to a mirror, and it just looked funny, not as droopy as I thought it would.  I tried to smile, and only the right side is able to smile.  Poop!

Maybe a few more days on the roids will help.  I'm only on 4 mg. though.  What good will that do, I wonder?

Love you muchly.  Talk to you soon!  Off to nap.

Stinky*

[Quixotic1]

4mg??!!!!  That isn't enough to do anything!!  Is this the end of a Dose-Pak?  Generally oral steroids begin to kick in about 18 to 36 hours.  However, they use 1000mg of Medrol in MS for a reason.  That is what it takes to really penetrate into the brain and to really affect the inflammation.

If that is all he prescribed then do not expect to feel anything.

Q

[Momzilla]

Thanks.  I started on Thursday.  My tingling just gets worse and worse.  Can't stand for long.  Do you think my doc will get the picture when I call him Monday?

Hypothetically,

Z*

[Momzilla]

Couldn't sleep.  Nap's a bust.

My paresthesias keep me awake.  And now the left side of my face is falling off.  Pretty. And I can't put two words together when talking to my family, who I'm sure think I brought a bottle of vino to my nap.

My right arm is PERFECT, though!

Toodles,

Zil*

[GrannyJo6]

Hi! I am one of the newbies here, too!  Your new schedule would put the best of us in relapse mode! Wow! Take care of yourself and I hope you get a "real" dx soon!

[Sarahsmom46]

I'm with Quix on the low dosages they have you on.  4mg or the dosepak would never help me at all.  Did they tell you why they put you on such a low dose?  I would be surprised if it helps at all, but for you sake I hope it does.  I'd talk to the doctor about it.  You need relief that will hopefully last a few months not a few days.  

Julie

[mokibear]

It's so good to see you back, you really have been missed!!

I'm just sorry that you are not doing so well but as Quix said it is no surprise with how much you have been working.

Call the doc on Monday hon, he needs to know that this isn't working. Can you crazy glue your face till then.lol

Try to get some rest this weekend Zilla then CALL on Monday.

Hugs
Moki

[Deej70]

Hi from yet another newbie here!  I remember you gave me such a warm welcome with my first post. (I also had the "complex migraine" diagnosis a couple times)  Welcome back and I hope you either get some solid answers FINALLY and at the very least, get some relief from those pesky paresthesias soon.

[Sunnytoday]

hiya.... it's me, and i'm bright and sunny today, so I'm trying to "think" a bit of my sunshine your way, and perhaps it will helps all those funky flare up symptoms you are having.... I had hope when you posted that you were getting a nice good dose but that 4 mg just doesn't sound like enough... you promise to call on Monday if this continues to get worse or at least, doesn't get better?

You know we miss you here... you welcomed me so nicely when I joined and I got to wondering where you disapeared to and then I remembered your job, you got it just about the time I "got" my new job by having a wonderful interview, and then promptly got worse, lost my transcripts and couldn't take my cert. yeah, long story.... but I was DEFINETLY pulling for you, since I could identify with you, and I REALLY wanted you to make it at your job (part of me says, if you can do it I can TOO someday). :)

So, I'm sending sunny thoughts your way, and I hope you have a wonderful Sun-day! :)
(((((((((((((hugs))))))))))))
~Sunnytoday~

[Salamander2]

I can relate to the speech difficulity,  I just choose to consider myself a constant source of amusement for my family.  Maybe I'll start using the wine defense!
Hope you feel better soon.
Sally

[ShadowsSister]

Hi from a nother newbe, that almost makes me feel young... NOT!!!!
You can check out my journal if you want to...?? I am working on posting my life's journey living with MS for 23 years..
I sure hope your Dr can get on top of this.. Quix is so right, that is sure a low dose they have you On????
I look forward to getting to know you..
Sending you Hugs on the winds...ShadowsSister

[Quixotic1]

Just tell your family:

"I'm not as think as you drunk I am!"

Quizzle

[young at heart]

Z,


SWEETIE, YA NEED TO CALL THAT NEW NEURO ON MONDAY AND THATS AN ORDER !!!!!!!

AFTER OUR WONDERFUL PHONE CONVERSATION  (  EVERYONE ZILLA IS ANBSOLUTE DOLL)  I DID CALL MY NEURO AND DISCUSSED WITH HIM MY STATE OF MIND AND ALL WE SPOKE OF.----SO CALL THE NEURO.

GOOD LORD SWEETIE HOW CAN YOU TRY TO SLEEP ON PROVIGIL AND THE ROIDS EVEN AT 4 MGS.  WOW WHAT A LOW DOSE.

I WILL BE STARTING 500MGS ON MONDAY FOR THE DANG OPTICAL NEURITIS, 1000 MGS ARE THE NORM, BUT WE HAVE TO KEEP AN EYE ON MY SUGAR LEVELS THE ROIDS SEND THEN SKY HIGH.WHEN ON THE ROIDS I'M ON INSULIN.

I'M SURE THEM BOYS GET TO GIGGLE,I KNOW MINE WOULD.

SWEETIE BE GOOD TO YOURSELF

T-LYNN

[doni54]

Good morning, Zil, are things any better today?  I woke up with you on my mind and wanted to check on you.

As always, I'm praying for you, sweetie.  Lets us know how you are.

Love & Hugs
doni

[Momzilla]

Your posts just crack me up!  But you all know how easy I am!  

Yes, T-Lynn and I had a wonderful conversation.  Everyone -- T is just like she sounds on the forum.  Wonderful, delightful, and full of SPUNK!  I look forward to speaking with you soon!

Actually, to my dismay, I think the low dose of steroids actually has helped a little.  And, of course I'm waffling about my self-diagnosis now.  My left side is still buzzing and droopy, but MUCH better.  Much.  And I was able to work in the bookstore yesterday for a few hours.  I forced myself to go to the first week of a new Bible study in the evening, and I was fine.  But I HAD to take a two hour nap in between and I did NOT want to get up.

I'm fuzzy and foggy and dreadfully tired.  I have two more steroid pills to take:  one tonight and one in the morning.  Then what?  I just don't think I have enough to call my doctor about today.....

I DO feel better, like he suspected I would.  What else could this be, if not MS?

Down for a nap on my treasured day off.  When I'd rather be doing something wonderful.

Zilla*

[Amyloo]

Hi Zilla,  I have two questions for you:  have you had an MRI of c and t spine?  How about a lyme test?  I am having a more definitive test done for lyme disease on Tues., as I tested "reactive" for two of the antibodies on the first one.  (I am not gettting any better on my Copaxone, in fact I am getting weaker and worse.)  My neuro said the two "reactives" were not important, as there were more "nonreactives" than "reactives".  But in my research I have discovered that my body is creating antibodies to SOMEthing.  

Just a thought, the diseases are soooo similar.  Love to you and keep reaching UP.  Amy

[Momzilla]

Hi, Amy!!!

I love hearing from you!  We haven't chatted in so long.  I am very sorry to hear things don't seem to be holding steady for you.  You were hit SO hard with a wallop to start and it just doesn't seem to let up.  

Be careful in your research with Lyme.  It is very confusing.  Are you sure you're not looking at the EBV reactives/ non-reactives?  Those are confusing enough to interpret.  If Lyme is the same, I'd listen to my doc, who knows how to read them.  There is so much confusing info out there from many just trying to make a dollar, in my opinion.

Yes, I have been tested for Lyme a few times, and have had my whole spine imaged with and without contrast.  Almost all my testing comes up aggravatingly normal.

The only things which have come up ABnormal so far in ALL my testing in the last few years has been:

Elevated protein level in CSF (just out of normal range) Twice

Very low Vitamin D

Human Growth Hormone deficiency

I really don't know how I passed my last ENG.  I have double vision (I think my one eye turns in -- my kids have seen it) when I am lying down and turn my head to the left.  The interpreter must have thought I was faking this.  It is the only explanation I can think of.  Unless they don't take note of things like that in an ENG.  I could absolutely feel my eye rolling around inside the goggles.  But, they said the exam was normal.  As everything else has been.

Thanks for your ideas.  Please be careful with your research.  I know you are desperate to find a better treatment.  But it won't necessarily come by finding a new disease.  I will pray for guidance and better health for you, my dear friend.

Reaching UP, and Love back to you,

Zilla*

[Amyloo]

Thank you; and as I just told Quix in a pm, I am NOT going to become a lyme groupie I promise.  It has helped me immensly to get opinions from you and Quix on this.  Yes, I am desperate; my neuro said I may (possibly) be dealing with a more agressive form of MS.  No thanks.

I will keep on keepin' on.  And I know who helps me daily.  Love, Amy  P.S.  I am so very glad you are happy in your new job.  I am envious. (wait, isn't that a sin? wink)

[Momzilla]

I'm glad, Amy!  Hang tight!

Hey, anyone who's interested~

I just got off the phone with the neuro, and told him that the steroids DID have me feeling better on Sunday, but not before and I'm getting the paresthesias back, and the incredible fatigue.

He's perplexed, he says, and will see me Thursday.  It's weird, because I know for a fact the man does not have an appointment until December.....

He asked if I had an angiogram (?) done. Of my brain? Yes. I had that done twice.

I told him I felt much better when they had me on Solu-Medrol at the hospital.  He said he didn't want to start fooling around with steroids until he knows why this keeps happening to me.  Steroids can break down your bones, you know....

He will see me at this mystical appointment Thursday which apparently didn't exist when I asked for it last week.  Can't wait.

Oy,

Tingle Toes*

[Quixotic1]

Well, there is a difference between regular follow-up appoinments and the urgent appointments that all doctors need to have available.   The front desk can only fill certain slots when directed to by the doc.  The doc may have urgent things like you have or follow ups appoinments from being on-call.  Or, the doc requests appoinments that are impossible (leading to mutiny of the scheduling person!).  I used to say, "Make it happen!"  My front desk hated me at times.

Don't overplay the improvement when you see him.  Explain that some things were noticeably better, but only for a very short time.  

Q

[doni54]

Well, isn't it nice to have an appt you need, but didn't know you had?

Good luck, Zil, I hope that this time the dr doesn't stop until you have a definite dx.

Sending you hugs.

doni

[Momzilla]

Thanks VERY much!

You have been so sweet to send many notes.  What a doll!  

I looked up angiogram.  I guess I haven't had one.  I hope he doesn't suggest this.  It just seems like such a big deal for nothing.  It doesn't make sense to do, in my opinion.  But, I guess he's the doctor.  The MS and migraine specialist extraordinaire.  

Thanks again for all your sweet, sweet notes.  Catch up with you soon, my friend!

Hugs back,

Tingles*