LIMBO--Scared,Angry, Giving Up

[wingnut19]

I was just wondering if anyone could join in on the conversations in here.....I hope I don't insult anyone by saying I have been in limbo for ONLY 10 months.  It has, however been the longest 10 months of my life.  I am one of those "limbo-ers" that have the MRI showing lesions in all the "right" places, the symptoms pretty 'typical', and still the Neurologist won't commit. I never thought in a million years that I would WANT a diagnosis, any diagnosis---Just so I don't feel CRAZY anymore...
I think I'm getting somewhat emotional because I see the Neuro on Monday for C-Spine and LP results.....Can you believe that I am more afraid of hearing, "I still don't know", than hearing, "Yes, you have MS"????  Am I pathetic,or what?
Thanks for listening

[Freespirit24]

There is just so many of us in limbo and we all find it frustrating and I bet more than one of us has wanted to just give up but I urge you to keep hanging in there. It is important to get it sorted out.I cannot say more as it has been said to you so well by the others. I just wanted to encourage you we are here with you.

Hugs

Sarah

[debj52]

that is tooooo cute.....deb

[marez]

Hi,
I just think everyone using differant and great stories summed it up well we all just want to know what IT is! I know I will take any DX as long as it is the last one and the correct one! I may get real angry later when whatever IT sinks in but at least then I will know what to do. All I know today is scared, crazy or frustration! You are so not alone none of us are thanks to this wonderful site!

The Remote comment- the reward you stated!---

yesterday my 8yr old dgtr said to my mom and I when we gave her one more thing to remember for us to do-- (who knows what it was, please remind us to get gas in the car or something) anyway her response was
"I am out of ink in my brain I can't hold it for you guys right now"
OMG we where laughing we count on an 8 yr old to tell us what to do next and where we are going now she is out of ink!! What will we do? My mom told her she would go to office max and get her a new ink cartiage if she would still be our brains! So she said "alright..as if If a have too"

So signing off as
Out of ink (my brain)
Mary

[Sunnygurl]

I totally relate to your feelings, hon. I have been to many docs over the years, but it wasn't until last April that the left side of my body went numb, and my vision went blurry and dim. This wasn't the first time I was having symptoms. I started feeling ill back in 2002, and I was shuffled from one specialist to the next. I've had lymph node biopsies, blood work, and Rx'ed so many meds I could start a pharmacy.  I was ultimately dx'ed with fibro in 2003, but that never seemed to fit my complaints. I really think the docs gave up after awhile, so I did the same. I took a hiatus from the doctors and swore I was just done and doomed to living in misery. So, last year I had my first official flare. Soon after my father passed away , so i went and I tried to tell my internist what was going on. She told me it could be two things. Either it was MS or anxiety.  My mind started to have doubts that maybe I was just overstressed and nothing else was wrong but nerves.  Well, 3 months passed and I was not feeling much better. I knew something was very wrong. I went to a Neuro for the first time and he was quite rude actually. He told me he doubted I had MS, and that after the MRI he would see what it could be. Well, I'm a very claustrophobic person, so I decided to have an upright MRI. The films were not very good, in fact the Neuro said you can't even dx much with that kind.  So, not to my surprise he called and said nothing could be seen on the MRI. He told me to go back to my Rheumy and have her continue treatment with the fibro.

To sum it up I still have all the symptoms of MS, and I have seen eye docs who say they think that's what it is, I've talked to my rheumy who doesn't even address it, and my internist who thinks my blood pressure issues are more important than finding the root of my problems. I wouldn't have high blood pressure if I wasn't so stressed out all the time wondering what's wrong.. lol  

Sorry for the long story, but the point is that 10 mos may seem like an eternity to you, but 6 yrs later I'm still waiting and wondering. Don't give up and don't think that it's all in your head. You just need to find the right doctor who takes the time to investigate and find out what's really going on.  

Take care,

Lisa

[wingnut19]

I just spent the last hour looking all over the place for my TV remote........I mean, I turned over couch cushions, looked in the dogs 'bed', bathroom, laundry room, and finally the kitchen.....I found it INSIDE the microwave!!!!!  OMG!!  
I need to put an ad in the local Lost and Found column....and offer a steep reward for anyone that can locate my brain!!  LMAO!

[spastic]

Hello and Welcome.  It seems to me that you are prepared for tommorrow, good. Have you wrote a timeline out?  Some neuros don't bother themselves with them but they are good to have.  Limboland stinks thats for sure. Have been in limbo since last July.  I was diagnosed Friday with a seizure disorder and that blew me out of the water.  I still cannot believe it.  I am going to have another opinion done though.

Good luck with everything and please keep us posted.  We all are friends here..

Ada

[speechgeek]

Wingnut

I love your name! You are not  crazy. I am a fellow limbolander. I told my PCP last week that I have an eye appointment for my blurred vision and I hoping for some ON. Who hope for ON!!!!!

Only those of us that would like to regain some control in our lives and start making treatment decisions etc.

Quix has made several recommendations to do a timeline and give it to the docs. I give it to all of them. It was the best peice of advice.

Please let us know how your appointment goes!!

Rebeccah

[wingnut19]

Sally:
Thanks for your response, and I do agree with you 100 percent!  I wish you the best as well....

Quix:

I'm going to just copy and paste my very first post on here....the one that I wanted a doctors opinion on.....Here it is:

Desperately need 'Layman's Terms"for MRI
by wingnut19
  
Mar 09, 2008 08:09AM
I am a 39 year old female that has had the following symptoms over the past 10 months: (Sudden onset)
CENTRAL sleep apnea episodes--was diagnosed at Sleep Clinic
Memory loss, trouble 'finding' proper words, electrical sensations in arms and legs, "lightning" in right eye, clumsiness, dropping things, bump into things, muscle weakess in arms and legs, some hallucinations (but I know immediately they're not real), retrieving wrong word when speaking, etc...I know there are other things, but cannot remember.
I have had an MRI with the following findings:
**Multiple small foci of increased T2 signal noted predominantly in the subcortical frontal white matter bilaterally and to a lesser extent in the deep parietal white matter. There are definitely greater than ten T2 signal abnormalities noted in the white matter. Perhaps one questionable peri-ventricular focus of increased T2 signal adjacent to the right frontal horn. Questionable tiny focus of increased T2 signal in the anterior pons eccentric to the left.  Questionable tiny focus of increased T2 signal in the anterior medulla as well.  No other findings noted intracranially.  
IMPRESSION--Multiple white matter signal abnormalities as described above.  The are most likely on the basis of demyelination and the appearance would be concordant with a clinical diagnosis of multiple sclerosis  MR follow up to document dissemenation and time may be performed, if clinical symptoms persist. ****
Could someone decipher this for me?  My Neurologist does NOT think I have MS, and I'm confused.
I should also note that I had 2 abnormal EEGs, no seizure activity though....???  I also had a brain scan that showed blood flow was "good".....I had a lumbar puncture and am waiting until March 17th for the results to be completed.
I appreciate ANY help or advice with this.....
Thanks so much.

[Super_sally888]

Hi,

good luck with your appointment tomorrow.

Limbo is a horrid place to be, though it sounds like you may not be there for too much longer.

You know I wouldn't even mind being diagnosed as crazy, but as long as it is a justifiable diagnosis and not a brushoff.

Very best wishes and thoughts.

Sally

[Quixotic1]

Hi, Welcome to the best place in the universe for someone who knows something is dreadfully wrong and cannot get anyone to put a name to it.  We KNOW you are not crazy for wanting a diagnosis, even if that diagnosis is MS.  Heck!  When I finally got my diagnosis of MS, I was frankly jubilant!! (I got pissed later, though).  That doesn't at all mean that you WANT MS, not in any way shape or form!  You want an answer, because that is the only way you can move forward.  You need a name to your torment, your enemy becasue that is the only way you can fight back.  Without an answer you can't picture a future.  We all know that.

The job of the neurologist is to look at what problems the patient is having and then do a very thorough neuro exam head to toe.  Only then can they determine what testing the patient needs.  You clearly have had a workup that is considering MS; the MRI of the brain, the spinal cord, and an LP.  we have a lot of thoughts to help you in the process.

Would someone find Amyloo's thread on "The Care and Handling of a Neurologist" and bump it to the top?

I would like to ask you to summarize what you have been through in the last 10 months.  Put it in something of a timeline, when symptoms showed up, how long they lasted, if they improved or went away, and what happened next.  What the doctors have said.

Once we have your story we can help you with specific questions for him/her.  If possible take a spouse or good, solid friend with you.

You only have tomorrow to do this, but we'll still try to help.

I was a physician in a former life and I'll try to help you make sense of stuff.  Remember that all things that look like MS are not necessarily MS.  The mimics need to be ruled out.  And all neurologists are not necessarily well educated about MS.  Some seem extraordinarily reluctant to commit themselves.  Some of us have seen half a dozen or so before we got whatever diagnosis we have.  

Do not give up hope!  There are several dozen of us here and we're here to help.

Quix, MD (not a neurologist and not here officially)

[wingnut19]

THANKS everyone......I feel tons better already....I will definitely try my best to speak up to my Neurologist if need be. I am not very good at that, but I guess I'll have to learn--and FAST!
I will keep you all in my thoughts, as well.....and know that I am not alone....

T-Lynn also!!  LOL

[young at heart]

WE ALL DESERVE QUALITY CARE , AND LIMBO-LAND STINKS. WAS THERE ONCE MYSELF.

EVEN THOUGH I KNEW THEY WERE INVESTIGATING MS, IT WAS STILL A STICKER SHOCK,BUT AT LEAST THERES A REASON FOR WHY I FEEL LIKE ****.

BY ALL MEANS JOIN IN, REALLY ASK YOUR NEURO LOTS OF QUESTIONS AND LOTS.

A LP DOESN'T ALWAYS COME BACK POSITIVE IN SOME OF US MSERS.SOME HERE JUST HAVE BRAIN LESIONS,OTHERS HAVE BRAIN,C-SPINE AND OR THORACIC.

I HOPE YOUR NEURO ISN'T A LESION COUNTER.ARE YOU SEEING A MS SPECIALIST? IF YOU ARE NOT SATISFIED WITH YOUR NEURO APPOINTMENT ON MONDAY,PLEASE SEEK A SECOND OPINION.

NO YOUR NOT PATHETIC,WE ALL DESERVE ANSWERS AND THE APPROPRIATE TESTING AND REPEATING TEST TO FIND THE ANSWERS.

ITS OKAY TO BE SCARED, ANGRY,BUT PLEASE NEVER GIVE UP.

T-LYNN

[floridamom2]

You are absolutely not pathetic for wanting a diagnosis!!!!  I have also been suffering to get answers for only 10 months and am ready to do anything to get an answer that does not just sound like a brush off again.

We have to keep opening ourselves up to this in order to find answers.  As Zilla said in a post yesterday "limboland ain't for weanies!".  We have to be strong and keep fighting in order to find a doctor who will put the energy and thought into our specific case.

I hope that you have finally found yours and that Monday, even if it brings a dx of MS, that you will be able to move forward toward treatment instead of staying here in limbo.

Hugs and I will be thinking of you Monday!
Kristin      

[Nerve_Wrecked]

I have only had 1 MRI, which was apparently negative (although my dolt neuro never lookd at the films, just read the report). I haven't had EVP's and am waiting to find out when I'll have an LP.

I also am seeing a new neuro next month who, along with regular neurology, specializes in MS, so we'll see what she says.

Christine
(un-dx)

[LATW]

I totally understand! I was in the your same spot 5 weeks ago.  I had been in limbo for a bit longer than you.  But only in serious limbo for about 10 months myself.  

Knowing is better than not knowing even if it is something like MS.  

LA

[wingnut19]

Christine:

Thank you as well for your kind words....I will definitely keep you posted with what happens on Monday..(if anything)...
Has either one of you had positive MRI's, LP's, etc.....??  

T.

[wingnut19]

Hi Erica:

Thanks so much for your encouraging words and support.....I truly appreciate it....
Also, I wanted to say sorry to you that you're going through this as well.  Funny thing is I just actually 'forgot' what I wanted to say....(LOL--typical for me, of late)
My God, where did my brain go....

T.

[Nerve_Wrecked]

Your not pathetic at all!!

I'm a limbo-er too, have been for 2.5 years. It's frustrating. It's overwhelming. It's very hard to cope. I have small children, and it's hard to take them out for walks, somedays it's too hard to take them into the backyard.

I get it.

I, like you, would handle "It's MS" soooooooooo much better than more "I don't know". I think it's common. I don't want an MS diagnosis, I just want an ACCURATE diagnosis, no matter what it is.

Like you, I'm tired of living in this h*ll, and not knowing what's causing it.

I hope you get some answers, and maybe even a diagnosis on Monday. Then you could pick up what you can of your life and carry on, with some idea of what the future may hold!

Good Luck and keep us updated!

Christine
(un-dx)

[ELT]

Hey, there.  Yes, anyone can join in, I shoved my way into LOTS of conversations here, in the beginning.  Well, MY beginning here, only a couple of weeks ago.  LOL

It can feel like forever, trying to figure out what is wrong with ourselves.  Yet, it can be a relief to finally hear that there is something tangible there.  It's not all in our heads, so to speak.  LOL

You are bound to be emotional, until you know all you need to know.  Your brain is in overdrive.  Hang around here all weekend, and then, you'll be ready for your appt on monday.  

Learn all u can, and be ready to ask your doctor informed questions.  Regardless of what you imagine it might be.  And, a good many of us feel the same way.  I am not diagnosed yet.  You are not pathetic, you are feeling like the rest of us do.

Ask any and all questions that u want, to help you to prepare for mondays appt.  

Erica