Any "Outof-theBox" Dox?

Hey, Peeps~

I have really missed you all here.  I take a peek from time to time to see how you all are doing.  I owe a few of you notes and PMs and I owe Doni and good squeeze and a good long cry.  What are we ever going to do for her?  And where, oh where is Elaine?  

All that aside, I really need you all to think for me, if you would be so kind.  To think back and remember if there have been any members here who have gotten diagnosed with NO lesions.  I know, I know, my same old song...(what can I say? It has a good beat, and it's easy to dance to.)...  The thing is, I am having an acute attack again, severe fatigue, severe weakness, numbness, tingling, decreased sensation, vertigo, my favorite routine....

I saw my neuro today, and he's just about had it with me and my zero lesions and normal test results.  Except for....drum roll, pls......FINALLY ONE ABNORMAL TEST RESULT!!  My last ENG came back ABnormal!! And it WASN'T peripheral vertigo, like my doc had suspected.  It was CENTRAL!!  Isn't that MARVELOUS??  Well, not really marvelous, you know.  Peripheral WOULD be much better in the grand scheme, meaning it is confined to the inner ear, not affecting the central nervous system.  But, as you know, I've been waiting for SOME kind of tangible proof that I have something that should be treated, I guess...I almost can't remember WHAT I've been waiting for.... But I've gt it, whatever it is.  Not much of it, but it's a start....Peeps -- Something is awfully wrong with my brain, and at the moment, I couldn't be more pleased.  Those of you who know me will 'get' this.  Those of you who don't....Well... ask around, I'll be OK!

ANYWAY, when my doc looked at the report (I asked about it after my absolutely awful exam -- weakness, extreme hyperreflexia, nystagmus, decreased sensation, much, much more), he told me that, yes, the test was abnormal.  He hadn't looked at it yet.  I asked if it was peripheral vertigo, like he'd suspected, and he looked at the paper, and seemed like he was breaking bad news to me.  He said very slowly, No, it's not....peripheral.  It's where the inner ear is having trouble communicating with the rest of the brain.  He was still staring at the paper and said he was going to order an MRI of my head.

Then he said that if I still have more normal test results that he may want us (hubby and me) to consider going to Rochester (Mayo) to try to get a fresh look there.  Oy.  From everyone's stories here, I was horrified.  So, I'm thinking that of course my MRI is going to be normal.  I had absolutely NO lesions last May during my last acute attack.  I don't think I'm suddenly going to show up with 9 new lesions in as many months.

So the question is....Does anyone remember or know of anyone who has had a dagnab great doctor who has diagnosed someone with clinical signs/symptoms? Without lesions?  My doc is kind of giving up on me, and I truly don't know where else to turn.

I spoke with Quix today, and she had the great idea of me aksing my doc for a spinal MR as well, since my reflexes are SO bonkers.  It was weird, but i sat there today, and when he tapped my right knee, my left leg jumped, too.  Quix said there was a term for that...and surprisingly it wasn't a psychiatric term!  Isn't that weird?

Thanks, as always, for listening.  I truly, truly don't know who else in the world I could go to with all this.  Even though I've not been around, I appreciate you being here.

Peace.

Feel well,

Zilla*

[uk2]

hi

its so great to here from you, i check on your profile now and again to see if you have posted.

after so long i know how it feels to get some news that might suggest you have what all your sx clearly say you have and i am with you all the way hun, your inspiring too us all in limboland i am back on the forum after a while as i am having new sx vertigo,pressure behind the eyes and the awful hug and r sideded weakness that has left me to register disabled its been 2 years since my negative mri emg lp and i am still suffering so after heading to the A&E after an awfull vertigo and loss vision and right sided face numbness he does full neruo work up and says my reflexes are hyper which they always been normal so he writes to my GP and says i have to go back to the neuro and urgent still waiting though 3 weeks on.

i bet quix can find somebody who is dx with just sx they used to do that before MRI anyway so why not now!!  

i feel i have fibro maybe but i also feel i have something else they are missing.

thinking of you.

sam

[Wobbly]

Hi there...it's been awhile.. sounds like your having a rough time and glad you found a Dr that will continue will testing you... you never know if your MRI will be clear or not..it can change after that length of time.  

I don't know if anyone here has been Dx without lesions at all.. maybe clear brain, but they had a spinal lesion...if I remember right.. so yes you should get a FULL spine MRI as well.. I have heard of people who only have spinal lesions...

nice to hear from you and keep us updated...hang in there friend

Hugs
wobbly
undx

[Fluffysmom]

I "get" it!  Congrats!  You do need a doctor that "gets" it, too.  I know there is a way to be diagnosed according to the McDonald Criteria without visible lesions; something about clinical lesions.  Like sympoms that could only be coming from a lesion.  Oh, heck. I hope someone comes along with the info you want, as that file in my brain is not available at this time.

Sorry, I'm kind of a fuzzy-brained vertigo gal right now.  I really just wanted to say "Hi, I've missed you a lot!"

I'm sorry you're having a relapse of all your worst old sx.    You deserve good sx, tee hee.

Bunches of Hugs,

Kathy  

[Alli78]

I think that is possible.  My neuro is very keyed into the symptoms and timing of my attacks, despite the negative mri during both episodes, he feels confident, but would like some test to be more suggestive. So I am off for a host of evoked potentials.  I guess I'm not sure how I would feel about injecting dmds without a lesion on the MRI.  But he explained that it is possible.  Good luck to you
Alli

[biowham]

Mom...reflex spreading? Yep, not a neuropsych thing!

NYU has been good to Craig. Can you consider that? And yes, get the dang spine, too. Why do WE have to do all the work for some of these guys? ;-) I think we should start billing out by the hour, too.

Bio

[Quixotic1]

Stinky - YIPPEEEE!!!  A POSITIVE TEST!!!!  YOUR BRAIN IS TRULY - VERIFIABLY ABNORMAL!!  WE HAVE SOMETHING TO POINT AT AND SAY "SEE?  SEE?!!!!"

Yes, When you have symptoms that come from the spinal cord it doesn't make sense not to image it.  You have bilateral leg weakness (paraperesis).  This is a spinal cord finding.  You have hyperreflexia in three limbs = spinal cord.  You have localized decreased sensation = spinal cord.  

I also think, if the next MRIs are negative you should have a second opinion from a really great neuroradiologist.

Now, at this point in your work up a single lesion would knock the good neuros over into naming this demon.  Many would be happier with two.  Mine was plenty happy with one for me given my history and exam and positive LP.  He was ecstatic later when there were 6 spinal lesions on the stonger MRI machine.

About me finding a neuro who will look outside the MRI?  No, the only clue I have is Dr. Herbert at NYU, but they looked at Mom's timeline and said to Elaine, "Without a lesion she is going to have a tough time getting diagnosed."  I think he was including himself.

It seems like Sarahsmom (Julie) has gotten a very open-minded evaluation at NIH.  I wonder if she should contact that program.  Julie, what do you think?

To all that don't know her:  Momzilla has had attack after attack.  She has classically abnormal neuro findings each time, but has had negative 3T MRIs and a negative LP.  She has had the most complete "rule-out" I have ever seen.  The only thing left is MS.  But, we don't know of any doc that subscribes to the 5% of people with MS may present with a normal MRI.  Sheesh, I would diagnose her with CIS in a licketty-split and begin treatment.  5 to 10% of CIS with a normal MRI will have MS.

Sam - I have always thought that you had MS.  The symptoms and disabilities you have are NOT consistent with Fibromyalgia!  I ache for the waiting and the indecision you have been through!

Alli - So your doctor will acknowledge this possibility?  Where is this guy?

Bio - Bingo!  Reflex Spreading.  Give that lady a prize.  This is the next step up in hyperreflexia.  Also you can see the "Cross Adductor Response."  When the reflexes are stimulated in one leg, the person involuntarily tightens the hip adductors - which pull the thighs together.  Yeah!  Birth control for women with MS!

Yes, we should do consultations for $$.  Lucy did on Peanuts.  I would need more than 5 cents, though.

Quix

[Amyloo]

Hi Momz,

Just wanted to say that way back when I had an MRI that showed bigger and more lesions in just a ten month period, so it's possible that your next one may show something that didn't show the last time.  And I totally agree with getting the spine; two lesions showed up for me there as well.  Love to you, I really hope you get the answers you need.   Amy  

[uk2]

Quix

means alot you too believe i have more then fibro, you have so much knowledge and i am lucky to have found a DR in A&E and my own GP that also feels there is more here the fibro and its MS but i also know i can be going down this route of mri and LP again for negative response and they are so much more opened minded in the US then they are in the UK and i would not pursue this if my condition did not contiune to get worse i would park it and wait ( though i did wait 2 years after clear testing) and now ended up disabled enough is enough i have kids to look after i need treatment!!

zilla

you got alot of back up here girl and some people with opened mined neuro's i just pray your find an open minded neuro how can they say this is CFS with all what been going on.
Have you never had a C spine MRI?  and if so why have they not done that.

wish you all the best and keep in touch.

sam

[sllowe]

Hi Zilla!

Well, I think my suggestions will be similiar to the ones above as I do think you need the spinal MRIs on the 3T.  I didn't realize you did not have those in the past.  They may tell the tale that's been alluring so many.

I'm happy something finally showed, though that result is not giving up an immediate answer - least it's a start.  

I'm thinking T-lynn's hunky neuro? YOu've probably already reached out to her, but that's the only other that I can think of to add to the one's Quix pointed out.

Sweety, I miss you.  And, I don't blame you for your reluctance w/his suggestion.  Does he have problems w/you seeking out another Dr. or place?

Nice to see your name here,
Love and hugs, friend.
Shell

[Sunnytoday]

Hey there, just want to put in my 2 cents here..... as I see that NYU was put up as a place to try. The doctor's are nice.... but if you don't have lesions it may not be the place to be. I have one large patchy lesion on my brainstem, 2 o-bands, and an awful looking neuro exam but they can't diagnose without more lesions or something more.

I do want to say that I love the doctor's and they will keep testing for anything under the sun for you, but not necessary diagnose you if you don't have anything clear cut.
Hang in there, I hope you find answers, let me know if you find that "out of the box" doctor, I will come and visit him too!
~Sunnytoday~

[doni54]

Hi Zil,

Well, it's about time some progress was made!!!  I can't add much to what everyone else has said, but you know you are always in my thoughts and prayers.

I'm praying for your answers to come in the very near future.  You're one tough cookie!!!  And I'm proud to call you my friend!!  You are an inspiration to all us limbolanders!!

Love & Hugs,
doni

[slightlybroken]

I'm glad that stubborn body of yours is finally giving up some evidence...(It's about time!!). At least those neuros can't say that this is caused from a complex migraine.

I am happy that you are getting some evidence. Maybe this year will be your year for a DX. I'll keep my fingers crossed for ya.

I wish I knew a good neuro. But if you end up finding one that thinks outside that box..you have to promise me one thing...You have to share..OK? I want his/her name and number please.

Miss Ya!!