i went to the neuro today and i think we are all on the same page now and it helped that i had the last "flare up" documented. They are doing both MRI's (brain and C-spine) and they are sending me to virtually every specialist that walks the planet it seems like. but that is a good thing and hopefully some where in all of this i will get my answers that i long for so much!

i tis kinda an overwhelming feeling to be THIS CLOSE TO AN ANSWER i mean i have lived eight long years being told I'm just crazy or just not saying anything about it at all b/c i was afraid to.


Now I am within as little as a month of a difiniative answer and I kinda don't really know what to think or do or say. It is the weridest feeling. I mean i thought when i got to this point i'd be estatic but instead i feel more like (bawling) b/c the feeling of having legitimacy is overwhelming.

Anyone out there have any suggestions for dealing with this (the forcible comming out of limbo land and finishing the "denial Mile" and comming into the Acceptance Alley???

I gotta admit this is new for me. I'm so used to being told I'm crazy when I know I'm not that it is going to be weird to have people actually take me seriously for once in my life.

I mean i know i'm supposed to be GLAD and all and I am in some ways but it is terrifying to think of the possiblity of a real cause for all of this and that denial of others won't exist to the extent that it did before. I thought at one point that I was over the denial phase of dealing with this nameless thing. but i realize now that I am almost face to face with it, that I'm far from being out of deinal. In fact denial is a much more conformable place to be!

I could use some cyber s right now b/c this is hard for me. And really scary too!

I don't know yet IF it is MS but I do know that I am very close to discovering the root cause of all of the problems (or at least most of them) and I'm scared.

How do you deal with this? Feedback would be greatly appreciated!

Rachael,

I think what you are feeling is the uncomfortable feeling of being out of control.

Your dx is out of your control.

Relax. Whatever it is you will deal with it. And you will be fine.

Peace.

Try to relax if possible. Iknow...Easier said than done!) But, stress won't help no matter the outcome. Like Bird said, it just is out of your control. My prayers are with you. You have a lot of people hear to support you no matter what the test results.

Get some rest tonight.
Take Care!

Please do NOT count on this. It is much more likely that you will NOT get definitive answers, no matter how much you want them. (I'm presuming you've previously had MRIs.)

MOST people who've been in "limbo" for a long time on these boards simply never get a definitive answer. They get an appointment with such-and-such a doctor, or get such-and-such a test result, and they are POSITIVE they're going to be diagnosed.

I bet 99.9 percent of those people come back a few days or weeks later completely deflated. Again told nothing is wrong, or nothing wrong can be found. Or they get conflicting information.

You are really setting yourself up for a huge disappointment. I will be very happy for you if you DO get your definitive answer, but you'll be able to knock me over with a feather if a longtime limbolander gets a clear diagnosis!

You would do better to engage a counselor to prepare yourself for the disappointment that is likely to come.

I say this with nothing but the greatest sympathy--please believe me. I have had symptoms with no answers for 9 years. I too have been treated like a hypochondriac.

I wish you the very best. But I don't think it's going to come in the form of a diagnosis. You need to turn your attention elsewhere. Get your SYMPTOMS treated and go about your life.

Please take care, and please prepare yourself for disappointment.

Nancy T.

hopefully i dont delete this again, for the first reply was long and was editing it, and poof. I spent 7 yrs going nuts being told nada was wrong yet i knew deep down there was, after 32 ER visit and 17 over nights and weekly visits at hospital, yet no real answer, and yes even I started to suspect my own sanity, and question myself a number of times, and once u do this then the docs suggestions have an easier way in your own mind,

if it wasnt for an etreme headache on one of my later visits, and there lack of being able to let me go due to possible law suit if i kealed over, they kept digging and found the cause with an LP and 2 mris. Granted this DX is missed a lot and I think at this point and time something needs to be done, change in protocol, its bad enough I am male so they assumed it away that it wasnt ms, but in almost every book I have read 9 out of 10 were being misdiagnosised, and some of them by mayo clinic and john hopkins, this has to change. this number shows something is seriously wrong in the assumtions and or testing or thinking. Either way please do not let their words influence what you feel and or believe to be true, and if it means new docs then so be it, a lot of stories on here deal with the fact that it was second and or third doc tha found it, dont despair and dont give in, stick to your gut feeling.

I understand the frustration completely. Been there Done that!

I was in limbo for about 11 years with so many tests and my Neuros had me convinced I was just a neurotic, menopausal, hypochondriac!

Finally; I made an appt with my Neuro and we sat down and compared all the MRI's, tests etc and because I don't have enough protien in spinal fluid to fit the criteria she can't diagnose definite MS.

She diagnosed me with CIS clinically isolated symptoms of MS.

Close enough. All we want is an answer; I have mine.

Hi all,

thanks for the encouragement.

I will respond to all the posts first by saying that there have always been weird sx but MS was NOT suspected until about 5 weeks ago. This is my first MRI in 8 years and the first one was b/c i was having "migraines" but that one came back clean! Since the migraines period of all this my sx have worsened tremendously and yet I KEPT VERY QUIET ABOUT WHAT WAS GOING ON!!! I didn't want people to think i was crazy (though some of the faculty at the university where I attended certainly did b/c it was obvious to their narrow minds that something was going on but since they didn't understand it then it must not exist!) but even my family didn't know how much i was suffering.

Most of the sx that I am just now finding out that: 1) there might be an explanation for 2) are actually significant (meaning that it isn't just a normal part of life for everyone like it has been for me) 3) there might be hope to get some of the sx midigated through the correct drug therepy. 4) I might NOT be crazy and 5) this is all so new to me.

all of these things are so new and recent. I just accepted 90% of my problems to be NORMAL PARTS OF LIFE. I have a pretty high pain tolerance and it takes a LOT on the weirdness scale to make me say so much as OUCH or WHAT WAS THAT??? Especially to a medical doctor.

Good example. I had a flare up (ya'll would call it an exacerbation) of painful eye movements with very blurry slightly doubbled vision in my left eye (optic neuritis). Plus full blown double vision. Plus my left eye moving to the beat of its own drummer (nastigumus). All THREE of those things happened at the SAME TIME and lasted for THREE DAYS!!! soooo, even that flare up is not as BAD as some that i have had and though it was hard i started and completed the week at WORK WITHOUT MISSING A SINGLE DAY of work. It takes a migraine thrown in on top of all of that to take me down completely and those were the types of exacerbations that i had FREQUENTLY in college. yet i never went to the doctor and only missed about a total of 6 classes due to the exacerbations.

Therefore the discovery that I am close to an explanation for the weirdness that looking back was really weird and at times seemed super weird was just mind boggling for me.

It wasn't until I got the wrong dx (the wrong DX of myasthenia gravis) and then had that dx retracted that we started suspecting MS. That was about 5 WEEKS AGO!

So I have and I have not been a long time limbo lander!!!

Hi BCR! Aha, so you HAVEN'T had the MS workup yet--if you haven't had an MRI for 8 years, then maybe it will show something, given your symptoms.

I can identify with thinking that things are "normal" for many years and then realizing that they are not. In high school I used to think headaches were normal--that everyone got them (because my mom had lots)--so I never mentioned my sometimes daily headaches to anyone. Now I realize they must have been migraines.

Then later it was the dizziness, achiness, stabbing head pains--I thought it was all just "me"--the dizziness was due to a not-so-great inner ear; the achiness was due to being overweight; the head stabs meant I was about to have a stroke, etc.

Here's hoping you get some true answers at last! But please be prepared for the opposite scenario, too. The answers just aren't always there.

Nancy T.