Everything's Normal

[ArtistLike]

Not my body, but all my tests.  Now it's official.

MRIs (brain, full spine): normal
CBC: normal
HIV: negative
ANA: negative
Lyme: negative
Lipids: normal
EMG/NCV: normal
EEG: normal
VER: normal
BAER: normal

Some nerve crowding in my right eye and "dots" on my lenses, but both are congenital and "nothing to worry about."  4+/5+ brisk knee-jerk reflexes with clonus, but could be just normal for me.

I've never done a recreational drug in my life, but I have a sudden urge to push a few thousand CCs of heroin into my arm.  

I'm venting, but I'm sitting at work and I want to cry.  The only thing I have to look forward to is Tori Amos's brilliant new album coming out next week.

http://www.npr.org/2011/09/11/140261371/first-listen-tori-amos-night-of-hunters?ps=mh_fl

[ArtistLike]

I'm just really depressed.  I have problems with depression, anyway.  I'd call my psychiatrist, but she's out of the country.  I'm exhausted.  I really just want to check myself into a public institution and let them lock me up.  I can't think straight anymore, anyway.

[sllowe]

Artist!

You should know we don't take too kindly to quiters :)

Looks like the docs exhausted their look into your CNS. Perhaps when you re-group, you can get someone to look into another area not yet explored.
Don't give up, you.
Regroup best you can,
-Shell

[Sumanadevii]

Supermum, I thought you were also a limbolander?  Did I miss something?

[Sumanadevii]

Your choice.  It was one I made too.  I would be sixty when it was dxed.  I too went to a neuro and he ran all the "tests".  His dx was a pinched nerve.  I had been searching for ten years before him.  He was the first neuro I saw.  Unfortunately he was stupid and my body is proof in the rice pudding.  How I wished I had listened to myself and continued on.

I won't detail the damage done to my body by putting trust in the idiot.

We all make our own choices.  I made mine.  I regret it.

[aussiepixie]

Hi again,   Unfortunately  two of my adult children have diagnoses of chronic disease (ulcerative colitis and ankylosing spondylitis) and they are being actively treated for this.  They have undergone full investigations and have their diagnoses.   Whilst life for them is uncomfortable, at least they know what they have and are learning to life with these discomforts and inconveniences.

The difference is that perhaps I will not be given a diagnosis.   If that is the case, I need to get on with my life as I am already 60 years old.   If my symptoms get a lot worse than perhaps there eventually will be a diagnosis....in the meantime, my choice is to do what I can to carry on as near  normal  a life as I can.  

P

[Sumanadevii]

And my question is, if this were one of your adult children would you tell them to stop searching?  To just let it go.  To get on with life with those symptoms?

I fear not.  Heed your own words.

[aussiepixie]

I hear you!    and I understand fully where you are coming from.  I have been on this 'limboland' ride for only a few months.  

I have lesions, blurred vision, violent myoclonic jerking, abnormal EEG and  ENG, parasthesias, numbness in my foot and sometimes severe pain in my legs and feet so I can't walk and also ataxia and I'm getting nowhere.  

As well, I have had the most traumatic ophth/neuro consult last week (see posts).  

I had convinced myself to treat the symptoms and forget about a diagnosis as I did not want to end up on the merry-go-round of doctors rooms.  I have my final (so I've convinced myself) consult with my neuro on Friday.   I have now just received my ENG results which are also abnormal (or maybe even a variant of normal) but I'll wait and see.  

I will see my doctor on Friday and then if there is no diagnosis at that time I will pack it all up and put it away.   I will let my general practitioner treat my symptoms.   The fear of telling my adult children that I am not feeling so good is enough for me to quit this searching for a diagnosis.  

P

[sadie405]

Oh man. I'm feeling for you. It's so hard being in the place you're in-- one minute, you think, "Eff it! They're negative. End of story. Fine. I'm forgetting this."

The next minute you walk out the door and fall flat because your leg just gave out.

Or, you're trying to read a book because life is for the living! and you are not going to live like you're sick when apparently there's nothing wrong with you!

But you can't, because your double vision won't go away.

Then what?

BTW, clonus isn't normal. Have you had brisk reflexes all your life?  Because the first time my reflexes were taken and they were abnormal, I almost fell off the table, *I* was so startled by how my whole body jumped. It was like a live wire had been triggered. I've been having my patellas tapped all my life, with my legs promptly and politely swinging forward-- so it was obvious to me something had changed.

Hang in there, man.

Sadie

[supermum_ms]

Wow never thought i'd get that for going against the grain, but to be fair to me, have you not insulted me because i dont believe having normal test results is a bad thing. Through think and thin, boy thats a blow considering all that i've been through, that kind of s_u_c_k_s!

Getting on the 'bandwagon' is not something i've ever been known to do, i support unconditionally, maybe if you knew me in life you'd understand that to be very very true. Please dont shoot me for having the guts to say something you may not want to hear, if i am anything, it is honest and i never rashly say anything! Jumping on the bandwagon goes both ways, and i cant see the positives for anyone's mental health or otherwise by turning something good (ie consecutive normal test results) into something it isn't.

I did not dismiss Artistlike's situation at all, i wasn't! F*&K it to hell and back but what is so fing wrong about finding out your brain is normal and not full of scars that are withering away your very essence, your life, your future, seriously what?! I want to walk away, i've tried for more than a decade to walk away, so maybe I stay in limbo because i dont want the truth of my future, its happening regardless, sigh.

My brain IS full of friking scars so pardon me for needing to celebrate someone who isn't walking in my shoes, TODAY!

Peace............JJ

PS medhelp please do not remove these posts, it just may need to be heard, please.

[imsolucky]

I thought I could just be a limbolander and keep my mouth shut but ya know I just can't. So you are suggesting because all tests came back negative that he should embrace that ,be happy for that and move on and forget the daily symptoms he has. Frankly you sound like some of the neuros out there! Our symptoms are real! Don't jump on the bandwagon of "tests fine your okay ,move on" thats the last thing we want to hear. We need you through thick and thin.

[supermum_ms]

Ok this might be going against the grain but from my perspective I really do think you need to find a way to get MS out of your head. I am not saying that something isn't wrong, not at all but I think you have enough hard evidence to reasure, not add to your fears.

I am not attempting to be unsimpathetic at all, but i think there comes a time when every limbo lander needs to face the fact that when they have been tested and tested and there is no evidence of a (serious) neurological disease then it is time to celebrate! I say celebrate because 'normal' actually from my perspective is fantastic news, what i wouldn't give to be normal, sh!t man your news is bloody fantastic!

So i say walk or skip towards your future with a new spring in your step, find your passion and feed it and feed it, live your life with confidence not fear, the fear will cripple you and keep you following the wrong path. Fight it regardless of what it eventually turns out to be, dont settle for fear of the unknown taking away your joy of living, fight it face on, tomorrow is a new begining if you'd only see the possibilities that this good news brings you.

So celebrate this news and get your health issues out of your head, look at your life and make sensible changes that make you happy, find your path and just go for it!

Hugs............JJ  

[Sidesteps]

Can I chime in on your decision to give up? Well, I'm going to anyway...

My doctor sort of explained it to me like this and for some reason it some significant peace to continuing to find answers and my symptoms.

She indicated that some people come into her and she can tell by taking one look at them, from across the room, they have MS. (Kinda like an asthmatic.)

Then, there are people like me that look normal, even test pretty well but once you start looking at them you can see subtle abnormalities or changes. These people, may have a more benign disease history and it's a bit more difficult to find the answers right away but there is still something wrong.

This is FRUSTRATING but in the end it means it's likely not going to be as serious as others disease courses. I am thankful for that. I don't think anyone would really noticed my shaky hand or that my leg lags behind. They won't notice my brisk reflexes or my numb leg. (I find it interesting that I have hyperflexive left lower leg, that is also numb.)

All this doesn't mean it isn't worthy of treating as soon as it's let itself be known but we should take comfort in this despite the frustrations. We don't want to be treated for something that we don't have. At the same time, if we ignore the issues then were are neglecting ourselves so the best approach is steady follow-up. In her practice, she continue to see and follow-up with these patients for years until something more comes to the surface or they get better.

I had the spinal tap last Wednesday and I think in the results I will find out if there is neoplasms (cancer). If cancer isn't lurking behind the scene then it's likely MS or another auto-immune disease that isn't going to be life threatening. I can handle that and that gives me the strength to continue with follow-ups once every sixth months or when I feel sick until they figure this out. I am not imagining these things. I'm just too complex for most to figure out. lol ;) :)

Don't give up. Just take a break, watch yourself and see what happens in a few months. I took a year and half of watching, wondering, getting tests, backing off, feeling sick again, wondering more then more tests, no answers, more tests, still no answers... but I finally feel at peace that IF this is an auto-immune disease that is affecting my CNS then we will find it eventually. I'm stubborn. ;)

[ArtistLike]

Re: PS--Her last few albums haven't been up to par for her, but I feel like this is her best effort since Scarlet's Walk, which is my co-favorite album (w/ Boys for Pele).  I'm kind of obsessed with the woman's music, in case that's not evident.

[ArtistLike]

It's been two years.  My job is killing me.  I'm pursuing a new one, but I'm such a symptomatic mess that just the idea of that scares the hell out of me.  But if anxiety could possibly be causing all this, then maybe a new job would be a cure-all.  But right now I'm only half competent, spend all weekends and nights in bed.  It's maddening.  I'll get over it, I'm sure, but I'm just at the end of my chain.  Again.  

Zen, after last year's "it's probably just anxiety.  And try to find some more comfortable shoes," I gave up and thought, OK, I'll live with it.  This year my left leg hasn't been fully cooperating and gave out on me twice on stairs.  I couldn't think for probably three weeks straight and just stared at my computer.  I had double vision.  I am pretty much deaf in my left ear right now, which happened with the resurgence of symptoms and has slightly improved and worsened continuously since.  I live a block from a fire station and a block from a police station, and when I sleep on my right side, I can't hear ambulances at all.  That made me feel like, OK, there's GOT to be something going on and I was determined to find out.  Now I'm just...well, maybe I'll just cry it out.

[zenhound]

PS -- Thanks for the link, I have been wondering what it would be like. I wasn't completely in love with her last one but have hope for this!

[zenhound]

Ugh. I am in the same boat (dif't symptoms) and it is a really awful boat. I think there may be some rats below decks, and it might be haunted.

That got off track quickly.

I had to give up for a while. Just sort of refused to think about it or deal with it in any substantive way, other than asking for dosage boosts of tegretol and anti-depressants when I needed them. It won't necessarily accomplish anything, but it might help you to take a step back for a while. It did me I think. Do what you need to do for you.

That said, if you start developing a bunch of new symptoms or greatly worsening ones you might be forced to deal with it sooner than you'd like. I wouldn't give up totally, but if you need to gather some strength for the coming storm, nothing wrong with that.

[Guitar_grrrl]

Dude!  Don't even think of it!  We're all pulling for you, here.  As many folks have told you, MS and other neurological disorders can be very difficult to diagnose.  I know you're impatient for answers, but I'm going to make a suggestion, here...

Sit back, breathe, make art, take up Yoga, or cycling, or walking, or some other activity that requires you're being present and in the moment.  If MS is indeed a question, it may rear it's ugly head in a future exacerbation, and therefore may get you a little closer to a diagnosis.  Until then, be good to yourself, and get out there and LIVE!

Here endeth the butt kicking...
Cheers,
Lisa

[ArtistLike]

Think I'm gonna give up.  But thanks.  I'll try to will it away.  Maybe I'll find some kind of religion and pray it all away.  If not, there's always the heroin...

[grannyhotwheels]

I don't know weather or not to say I'm happy for you or that I'm sorry... It's great that your test are all ok but then comes the bad part when you know there is something wrong and the doctors can't find out what it is... Don't give up... There is a doctor somewhere that will find the answers but you have to find that doctor... I know that's easier said than done but please don't give up...

I'll be praying,
Carol