SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
trying NOT to talk and/or mention my sx.
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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trying NOT to talk and/or mention my sx.

I don't know about any of you, but I have been working on not talking about anything regarding my neuro issues for at least the past 3 months.  I work at ignoring my own symptoms while being careful not to: wince, fall, tip-over, say "Oh God that hurts, "I can't see the floor", "I can't tell how far away you are" or even discuss doctor appointments or tests.  I take my medicine as quietly as I can and work around the house.

Why"

I sometimes think even my family thinks I am nuts.  Sometimes I think that I am nuts too.  I feel embarrassed and stupid that I should be able to handle everything better.  Sometimes a family member says "why haven't you done ____yet?", to which I respond: "I do as much as I can but I haven't been able to get that done yet.  I feel like other family members would be a better patient than I.  

It's not that my tests come back negative either, it's that they haven't yet been conclusive.  

So, like all of you I am here in limboland not knowing where I fit in.  I want to know what this is so I can fight it with the help of a doctor(s).  

I just want to stop talking about it or even thinking about it.  How do you deal with this stuff?  What do you think"  

Thanks!
Related Discussions
40 Comments
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428506_tn?1296560999
There are certainly two sides to this.  

One the one hand, your body is sending you constant signals that something is wrong!  That's evolution in action, as ignoring our health can be deadly.  It is therefore natural in my opinion to be a bit preoccupied when a yet unknown medical condition is turning your life upside down.

On the other hand, there are social boundaries and limitations to any relationship.  While I was undiagnosed, I reached out to friends, describing to them in what I now realize to be too great detail, about my situation, symptoms, and doctor visits.  Some of my better friends addressed this with me, and actually that is what prompted me to seek online support.  And it made sense to me:  Who better to share this experience and frustration with than others who understand exactly?  

I also took up journaling and that was also helpful in keeping an organized perspective on my situation, and in sparing those close to me.

The sad truth is that when people ask "How are you?" they are often only willing to accept the obligatory "Fine, thanks for asking" or "I'm good, and you?" level of response.  More than that can make people uncomfortable, and it's better to play it safe than to create an awkward situation.  

I was deeply saddened that certain close friends turned their back on me, but overall that was balanced against the support I found from unexpected sources, both in my personal life and online.

So be kind to yourself and accept that given your condition, your mind is required to keep nagging at you to fix the problem.  Doing your best to channel those worries into beneficial activities like support group participation, writing, or even art, will hopefully make an uncomfortable situation a tiny bit more bearable.

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Thank you sor responding to my question and for your encouragement.  I will start journaling like you suggested as well as tracking symptoms and just organizing and educating myself about all of this.  I was also thinking that getting more involved in the needs of others always helps too.  

It really is difficult to know how much to share with others, despite the fact that I often feel that I want to share more.  I think I want some type of reassurance from friends and family-----but like you said they can't always deal with it.

It has been a while since I worked with my art----that's a really good idea.

take care
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1063463_tn?1302278219
I try to also not talk about my issues.  At first, it consumed me.  As time has moved on I have figured that eventually everything will come to light.  However, the friends that turned their backs on me I have dismissed from my life.  I hope they never have to go through this but should they have to they need not look to me for help.  Who needs enemies with friends like that?  I realize I dumped a lot on them but they have no clue how much i did not share.  They have no idea how scary it is to be so sick and noone can tell you why.  I hope they never have to know. I have found support here that fits my needs better and now I try to not let my illness consume me.  Take care!  Hugs from kentucky!
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Yeah, I have been dealing with this too.  At first I was talking about everything, but as time passes and you don't have a diagnosis people start thinking you're nuts.  At this point I'm mostly just biting my tongue and not saying anything to anyone.  It *****.

Wonko, you mentioned support groups but I don't know how you can go to a support group when you have no diagnosis.  Are there groups for people like that?  "Something could be wrong with you but maybe not and who knows what it is Anonymous".. maybe I should start one.  

I don't know, for the moment I am just shutting my trap, keeping note of symptoms as they come, trying to get into a psychiatrist appointment, and hoping that things either go away or get so much worse that docs can no longer deny something is going on.  
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Hello!  I have been having neurological symptoms for about 7 years.  Mine started off as severe vertigo.  It lasted for about 3 months then just slowly got better. The vertigo did not go away but it slowly faded into what I call"spells".  In April of 2009 my life changed.  My legs just gave out on me.  They were heavy and tingly.  I blew it off as stress until I had symptoms that I could no longer ignore.  I had stabbing eye pain. That turned out to be Uveitis.  I was worked up for MS(supposedly negative) and many other auto immune issues.  After many months of struggling to get a firm dx, I decided to break away for awhile and just tried to enjoy life.  I am now entering a new phase in my life and decided to begin my search again.  I have new symptoms now and it is looking a lot less like MS and more like some auto immune disease.  I sure feel for you.  I read your posts on the MS forum and it sounds as if you have really been through the ringer.  I can offer some advice.  If you feel that your doctors are blowing you off, find new ones.  DO NOT GIVE UP!!  Take a mental break if needed but never stop looking for a dx.  You will find a doctor to listen to you eventually. I found a PCP that takes me serious and has been a a Godsend to me.  Have you seen a rheumatologist?  If not, I would suggest maybe going that route.  Again, this post is off subject but i just wanted to respond to you.  Take care and hang in there!!
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Hi Red Flame

oh my goodness, yes! How difficult it is to live with undx'd and debilitating sx and yet not be able to really talk about them to family and freinds or to feel you can't.

Like everyone else who's posted here, I've had the same experience with people. Only last night a friend finally realised that what I've been saying for 5yrs is actually REAL! This is because a workmate of hers is also beginning to go through a very similar experience to mine. My friend realised that I'm not alone and not nutty!

But it's uncomfortable to watch her sort of embarrassment.

Like you, dee, I've dismissed doubting and callous friends. We really can do without these types.  At least now I know the friends I have are really my friends.

And for everyone who ever thought they were imagining sx or if anyone is saying you're imagining sx, please do read http://www.medhelp.org/health_pages/Multiple%20Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36  ;(and part 2 as well).

hugs
samxx
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I understand you all entirely , I have known most of my life that I have not been normal, I have been tagged as having an “undiagnosed Neurological Illness”for 16 years , I am now 57 & have gradually got weaker, I have struggled all these years trying to appear normal, I cook for my husband, clean & generally run the house, simple tasks such as chopping veg actually cause my thumb joints to feel as if they are detached, but I carry on, I am not a martyr but neither will I be a moaner!

I am finally changing my attitude, my mother is nearly 90 & expects me to run around after her just because it is my duty as a daughter & the fact that I am 57 yrs, I am sick of her telling me what her friends daughters do for there mothers, maybe they do, but they are normal. I have now opened up medical investigations again & this time not kept it a secrete , peoples reactions are mixed , most had no idea what I suffer, some can’t understand that I am not more concerned about the possible diagnoses of Marfans, but to me it makes little difference, I am not normal & that is that, it’s the day to day struggle I have to contend with not a name. Sorry I think I have just turned into a moaner!!

Thankyou as always for this place in my life.
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1063463_tn?1302278219
Hey Ticker!  Yes it is hard to keep it a secret and i do not feel that we should have to.  It is not our failure it is a failure of our medical teams.  I have told everyone that I know,"One day these doctors will find out what is wrong with me and at that time I do not want  sympathy because when I really needed you you did not believe me."  It took my husband 4 months to really believe that i was sick.  He kept telling me to suck it up.  When I first got sick last year, it took me almost 8 weeks before I told anyone how bad I felt and by that time I could no longer hide it.  My mom took one look at me and KNEW that I was really sick but someone that I lived with thought I was making it up?  Please.  I have not gained anything out of this.  As a matter of fact I have lost a lot.  Please everyone do not give up on finding answers.  The more of us that are persistent the more doctors will have to believe us.  Take care!
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1312898_tn?1314571733
Hey, this is really a great thread.   So many of us feeling and experiencing the same things.  We really need to stand together and post our symptoms and any sort of  lonely type feelings we may have.

I think all of this leads to feelings of separation from the people we need the most.

Let's support each other.  When we each get diagnosed--we will have a party online.

Perhaps our Vindication Party!!
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1063463_tn?1302278219
"I think all of this leads to feelings of separation from the people we need the most."

It sure does.  Of all the people in the world the one that I thought most would support me and try to understand is my husband and apparently I was wrong.  My marriage is falling apart, my life is upside down, and I feel inadequate these days.  Every chance he gets he throws in my face what i could be doing instead of sitting around being sick.  First off, I do not sit around being sick.  I do a lot more than my body can handle most days. Granted, it is less than what i used to do but I still try.   I did not ask for this.  I have not gained anything from it and would not wish it on my worst enemy.  It is a shame that we have to justify ourselves and our illnesses everyday because doctors cannot find out what it is.   Sometimes I think it would be easier to just pack up and leave and never look back.  One day, he will need me and providing i am still around I guarantee I will not treat him the way he has me.  That is the difference in him and I.  I care he doesn't.  He is selfish and only looks at how my illness has affected him.  He fails to see that it has affected everyone in my life, and most of all, me.  Sorry for pity partying it is just one of those days!! Take care!
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You bring a tear to my eye, dear lady.

You do not deserve this kind of treatment from your partner!

I hope he will see the light and realise you need his support, not his anger. If he needs to be angry, he needs to be angry at the fact the dr's can't dx you, not at you.

Please know that you are not inadequate, you are unwell.

I really hope you and your husband can become a team, that's what needed in this instance, the two of you to come together and figure out what's happenning to you.

Be well. And know we care.

Mike

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Hey all. I'm one of those who has also stopped talking about my symptoms to the "real" people in my life. If I speak to my parents, they just brush it off and say that it's stress. I stopped telling my friends about it ages ago. First they were very intrigued by it and I kinda became the circus freak that was on display. Then I became the laughing stock as they started centring their jokes around me. As time passed though, I think they realised that I'm actually unwell because I'd blow them off for sleep and they also saw that I started to struggle with my speech. Now we've kinda reached this mutual agreement that no one mentions it. So now I just grit my teeth my teeth and try be as normal around them as possible. The only people that I now talk to about this my "virtual" friends and I have one person left in the "real" world that I feel comfortable to chat to about it all (besides my neuros, they are great) and that one person is one of my lecturers. He's been really great through this all. Like last year after I had a 2 week hospital stay, he sat with me for 5 hours to go over all the work that I missed while all the other lecturers said I must just go over it by myself, that's most probably why I'm repeating the year. He's always willing to listen and he gives great advice as well. It's amazing how solace while the people that I'm supposed to feel close to have shunned me. I'm in that place now where when people ask me how I am, I just use the obligatory "I'm good thanks and you?" I can't remember how I stumbled across this site but it really has been a heaven send for me. Take care everyone
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428506_tn?1296560999

I am so sorry to read that many have gotten the brush-off from those we depend on most.  There are a lot of difficult-to-swallow life situations that come along with getting sick, and I think being let down by friends and family is one of the toughest.  I tired to move past this long  enough ago that my feelings are less raw, but this reminds me of a lot of hurt.

I also want to add that getting a diagnosis of any kind does not necessarily fix this problem.  There are a number of illnesses for which most of the population has little to no knowledge or understanding.  And depending on your situation, you may not want to share the details of your health with co-workers.  So no matter what your status of dx'ed or not, and with what, if you chose to keep a lid on details you may never feel validated.

My dx is chronic Lyme disease, which most doctors can't agree on if it even exists, how to test/diagnose it, or if/how to treat it.  I had to get a referral to a special doctor who would even take my case and treat it.

Most of the people I told the details to had little to no sympathy, since the popular knowledge about Lyme is that it's "Hard to get, easy to treat."  The truth is that I had to get a lot worse before I started to get better, and that at 1.5 years I'm still in treatment.  But almost no one understands the implications of my dx/tx.  They don't "get" why I am still sick, or why I have some days when I seem ok but other days when I'm still laid up.

At work, I kept my situation under wraps to protect my career.  For a year I worked part time, and with poor consistency.  Since I didn't disclose my situation, I had to live with people assuming that I was lazy or weird or whatever they thought.

I would still travel to large meetings/conferences as much as I could, where I would give presentations to audiences that had no idea that I was sick, working part time, and delivering my talk through tingling, buzzing, burning, aching, and exhausting fatigue.  It was/is like fighting with one hand behind my back, but only I know.

Further complicating my situation was that I was working a term position, and didn't have a permanent job.  So yup, I had to go on the job market at a point in my treatment when I still couldn't work full time.  

Thankfully, I am over time making improvements and I do work full time now, and I have secured a permanent position to start later this summer.  But it is still a big struggle for me to get on with my life.  I use sick leave as fast as I earn it, which of course hurts how well I look.  I know I can't keep up with a healthy person my age, and worry about comparison.  Often, I'm so exhausted that I go to bed immediately after work.  

I miss out on doing so many "normal" things that I feel resentful at times, while other times I realize how lucky I am to be slowly but surely getting my life back.  But it is a very personal battle for me, and yes, when people ask how I'm doing, I just smile and say "Good, thanks for asking."  

Thank goodness I can come online and release some of this stress, and I'm also lucky to have very few but very wonderful people in my life.

Best of luck to all.
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Hi all

It's made my heart so heavy to read your experiences. I could cry for us all.

Only the other day I was talking about this awful treatment we get with a real life friend who has serious chronic medical issues - and who routinely gets this unkind, brush-off sort of behaviour, even from doctors.

I can only think that it comes from something very deep in human nature, seeing that it's such a widespread reaction. It's not a cultural thing I mean.

As I've said here before, I've experienced it in shedloads; my partner left, my kids didn't understand and are still secretly resentful that their mum is not their 'proper' mum now. And the doctors...well...their mistakes through callousness, prejudices and just-not-listening are astounding. It's made my difficulties (in every sphere: health, social, economic, emotions) far worse than they need have been.

In fact, I have just been dx'd with complex (i.e. caused over time) post traumatic stress disorder because of it. The psychologist I've recently been seeing actually gets it...she gets exactly what's happened here and how the chronic failings of the so-called health service have actually caused this.

It's an obscene indictment of humanity, isn't it? Dismissing real illness actually creates more illness and disability. I've come to a point where I just don't understand most human beings any more. I mean, WHY do doctors go into medicine if they don't want to dx and treat people? Why do allied professionals go into e.g. nursing, psychotherapy, social work, etc if they don't want to actually pay attention to the needs of their patients or service users?

Meanwhile, most of us with chronic neurological conditions struggle on and on with little understanding, little support and even derision from many around us. This is exactly why Maria, bless her, started this board: so that others like her could find support and care and understanding.

I echo the sentiments of all - we need to keep on pushing for proper diagnoses and to support each other to do so. And yayaay!!! then we need to have Diagnosis Parties as and when each of us gets diagnosed eventually!

biggest hugs to all who are suffering from the ignorance and dismissiveness of their doctors or friends or families...
samxxxx
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1063463_tn?1302278219
After reading your thread I would have to say that you are so right when you say that not being properly diagnosed causes other illnesses and disabilities.  I never suffered from anxiety or depression until i became ill.  Now I have both.  When the doctors ask me I am hesitant to tell them that I have anxiety because I am afraid that they will blame all of my symptoms on anxiety or depression when that is not the case.  My illness and the lack of doctors taking me seriously has created anxiety in me and the fact that I have no life and what life I do have is falling apart is causing depression.  Unless someone has dealt with these issues they have no clue how to react to it.  As far as why do doctors and nurses enter in to the medical field when they have no desire to help people like us is:
1) They are in the practice for the wrong reason.
2) They do not want to offer the time that it takes to diagnose hard to diagnose cases.  They are looking for horses in the field of horses and not that zebra.
3) They assume way too much and do not really have the facts.
4) They DO NOT LISTEN TO US!

The list goes on and on.  I have one doctor that listens and I feel truly cares for me but even she has not been that great of a help to me but at least she believes me.  I wish we all could get the answers that we deserve.  It is not fair to  us or our families to have to be subjected to this.  I have even tried to contact doctors from Mystery Diagnosis but I have had no luck locating them.  I know that sounds extreme but desperate times calls for desperate measures...lol...Take care people~
Dawn
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It is a sad day indeed when I see so many people online that are in this situation of not getting answers and/or help from the medical world.  Unfortunately, more and more people are going into medicine/healthcare for the $$, prestige, misc. reasons that have nothing to do with HELPING PEOPLE.  If you cannot be diagnosed in 20-30 minutes, then..........well you all know what happens.  The situation is turning into make it quick, easy and lucrative for alot of physicians.  There are still some good ones, but, VERY DIFFICULT to find.  I have worked as a nurse for 12-13 years, so I have seen the good, bad and ungly from other so-called "nurses" and "physicians" that could care less about their patients and more about the $$$, titles, etc.  They love the status, but not helping others.  OR they are SO incompetent they should be NO where near LIVE people.  At one time, I got fed up seeing all this crap and wanted to walk away from it, but I thought who will be there to fight for these patients?  

Then, there are those people who were downsized from their jobs and float into the medical field because they heard it was "stable" and a good way to make LOTS of "$$$$$." ;NOT a GOOD idea.  I find that they make the WORST medical workers because it is NOT "in their blood" to do this kind of work; they were forced into the medical world.  

On the other hand, patients present with symptoms sometimes that have NEVER been seen or heard of because it is just something so truly rare.  I had a friend who fit this category; only 10 people in the WORLD had this condition.  She died last December after living with it for 24 years of her life.  She was only 43 when she died.    

To make a long story short, I believe it is a combination of things creating this world of "limbo" for alot of people.  And yes, as a nurse, I have experieced this "limbo" situation myself.  

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1137779_tn?1281546105
Hello and welcome Londres

I'm sooo sad to read about your friend. I wish the medical fraternity would learn that there *are* more hard to dx diseases than they're taught.

I think you and Dee are spot on: it's a combination of things which add up to some very poor service for far too many of us.

And, Red Flame....I'm very sorry that we've gone off at a bit of a tangent on your post, but you've quite rightly stirred a hornets' nest here!  ;-)

bestest
sammxxx
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Merci/Thanks to all for your welcomes.  
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I think u hit the nail on the head...so sorry about your friend.  it is  a shame that we all must make our doctors to believe us.  They should always believe their patients until they have a reason not to. I think most of it is a money thing though.  People think they can make a lot of money in the medical field and do not think of the fact that, we as patients, put trust in them, basically we put our lives in their hands and that is a heavy load for anyone.  There are good doctors but far too many bad ones.  Take care all!
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1312898_tn?1314571733
I am so glad that we have been able to post our frustrations and share similar horror stories.  

I too believe that the 'trauma' we are going through each day is another diagnosis of it's own.  I believe that the medical profession is incredibly misogynistic.  Illnesses that are predominantly women are often 'brushed under the rug', minimized, or just plain ignored.  Then there are diseases that are predominantly women but are said to be more severe when the patient is male.  geesh!!!

There was a case a few years ago when a young woman went to the emergency room at Cornell U. in New York.  She 'claimed' to be suffering from 'neurological type' symptoms including muscular twitching and 'jerks'.   The doctors basically blew her off but allowed her to remain the in the emergency unit, even restraining her becuase of her 'behavior'.  The docs assumed she was mentally ill and ignored her.  She died of Serotonin Syndrome while in restraints.

My point is that if you even show an inkling of having 'depression' or 'anxiety' issues they seem to immediately put up a wall.  The first question I get is "where do you get your Effexor?"  I think I should start telling them I get it from Walgreens.

And to those of you that have lost friends and partners I am soooo sorry.  

Someday we will have our definitive diagnoses.  I think that each of us should fax copies of that diagnosis to every doc that would not help us.  Sadly, that won't heal the bruises we already have from the medical field.

I am, really ranting aren't I-----I just am so angry and have nowhere else to rant.

Thanks for letting me 'go off the deep end'!!  :-)

lois
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1137779_tn?1281546105
Red Flame...that didn't read like a rant, more like an accurate assessment of the situation many of us face. I agree about misogynistic docs. BUT, I do know two men who have had the same treatment.

Having said that, the two men I'm closest to have had stunning medical attention this last year (in one case the ER docs called a top national consultant away from a dinner party 200miles away at a weekend - for something that was actually far more minor than anything I would go to the ER for). I know if I consulted a doc about the same sort of things I would be dismissed and ignored and diminished.

You're right - this IS real trauma. QED my dx with complex PTSD. There's a tacit understanding that the way I've been dismissed has contributed to this condition.  

I expect a formal neuro dx sometime this summer - when i can summon up the courage to see the neuro. I too have that plan to send copies to each of the so-called doctors who have been so vile to me, together with a request for an apology!

But really, if I never had to meet a doctor ever again it would be too soon.

>>>uh ho...sounds like I'm on a rant now!

samxx
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1312898_tn?1314571733
You are not ranting at all, I think it helps all of us to listen to all of our stories.  Our stories are so powerful----and I think that together we become assertive and empowered.

We need to see each other through this, I'm not sure how but we can stick together in all this pain that we are in.  I have PTSD too (from a different source), all of this trauma has worsened my symptoms as well as my depression.  Actually,  talking about the anger lessens the depression.  

Lets just keep this up---we will make it somehow  
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Well guys I have read your posts with interest.

Dee let me tell you a story about husbands lol.

I have been sick nearly 4 years now and in the main I have worked hard to keep a home and my sanity and I try in the main not to moan about my pain and illness there is only so much of that cr*p that even I can stand.

Anyway my hubby fell 2 weeks ago badly he doesnt know why. Scary.

The up shot is he has broken a rib which is very painful so he is on Tramadol for the pain.

First off I have been in pain for over 3 years somedays so bad I wish god would take me from this earth just to get relief, but I have never resorted to pain killers, as I firmly believe once you start them they do more harm to your system then anything. But thats my way I respect others if they need to take them for the pain.

So he is off work and cant do his hobby which is fixing his classic car.

I found him sat by his computer last week CRYING....... I said to him why are you crying? He said to me because I cant do anything I like doing and I have to just sit about for the next 6 weeks at home getting bored..............................

I said to him........ WELL WELCOME TO MY WORLD....

1. At least you will get better.
2. Stop feeling sorry for yourself.
3. Concentrate on the things you can do.....

We had a long chat and I encouraged him to take up his CB radio again, get his radio licence renewed, and also to go fishing which we both used to enjoy.

I said to him perhaps if you had given me a bit more support I would not have plunged so deep into depression.

He said after just 2 weeks he cant understand how i have coped so well.

In the last 4 days we have got on the best EVER for a long time, as he has had a real wake up call.

I hope you give this message to your husband to read.

LIFE can change in a heart beat and we need each other. IF one of us is sick we need to support that person for as long as it takes. IF we both end up sick together then we need to support each other through it THAT IS WHY WE GOT MARRIED IN THE FIRST PLACE. To love each other in sickness and in health......There are no guarantees in this life that is for sure.
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I just loved your post.  I tell my family all the time you do not know what life will bring and must be willing to live with what you cannot change and not allow it to break you. The difficulties of life are the true test of love, compassion and character.

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1063463_tn?1302278219
First off it is GREAT hearing from you.  See my husband was involved in a car wreck about 6 years ago and blew 2 discs out in his back.  He was off work for 2 years with it and I SUPPORTED HIM  emotionally, physically and everything.  He was very supportive of me at first then because no doctor can diagnose me he thinks I must just be making it all up(even though he has witnessed things happening to me that i could not possibly make up).  After that last post I offered him some options:
1) Stay with me believe in me and help me find a diagnosis.
2) Pack your bags and don't let the door hitcha where the Good Lord split ya.

Needless to say, he is still here.  He came to me and apologized and explained himself to me.  He said it is very painful for him to see me sick.  He doesn't know how to cope with it.  He is being better.  Thanks for input and I hope your hubby and you get better!  Love and hugs!
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I guess it's basically like human nature to only realise how things are for others when you put yourself in their situation. I would love to put someone I know in my shoes just for a day so that they can know what a struggle I go through. I know that sounds a bit harsh in a way but how else can you make a person understand what you are going through especially when they prefer not to talk about it. It would really be nice if others could just wake up and smell the coffee, then maybe we could be more open and chat to them about what we are actually going through and we won't feel like we're burdening them with all our troubles
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I sooo know what you mean.  I was thinking about just that today.  I don't think that it's harsh at all.  I feel judged by others even without them saying anything.  I have been told 'use it or lose it'  for one example.  I do the best that I can.

Last Friday after my spinal tap I drove 10 miles to get the pain script filled,  I know I wasn't suppossed to drive.  I cleaned the kitchen the day after the tap.  Still, I always feel that I come up lacking.

There are several people that I would like to have 'in my shoes' to see what this is like.  To see what a huge struggle it is to even take a shower, dry off, wash my hair and get dressed.  Those are accomplishments to me now.  I used to do all of those within 30 minutes or less.


For us-----making it through the day is a big deal.  
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Wow! You really hit a nerve, no pun intended. (Okay, I intended it and I'm laughing at my own lame joke.) I had just posted something related to this topic on another thread. I found this one just by accident as I was looking through profiles of other forum members.

This is just too great of a burden for me to bear totally alone, but by its very nature, it leads to growing isolation. I'm so very thankful that I've found this place to share, to vent, to be encouraged, though I am still appalled at the treatment so many good people have received from the medical profession and from others in their lives.

I'm now looking for a job, and realize I cannot disclose this to a future employer. With desperation, I think, "Who is going to hire me? Would I hire me?" I don't even want to be in the same room with myself at times. Tired of hearing my internal complaints. I want the pain, burning, mental fog, seizures that aren't seizures, fear, and alienation to go away. I fight to get to sleep, and think every night that tomorrow it will all be better, a new start. Yet, I awake to the same cr** every day.

My husband has been a rock. However, he seems to think that "working on" this, causes me more grief, stress, etc. and he gives me a hard time about any time I spend online looking for answers or trying to find support. Still, I trust my own judgment, and I know that this is what I must do to get better, or at least not get worse.

RedFlame, I can't believe you were able to drive or do anything after your spinal tap. That's amazing to me! While you aren't hearing it from those who haven't walked in your shoes, I want to acknowledge that it is, indeed, a big deal to make it through the day, and something of which you, and I, and the others on this board have just reason to be proud. One down, and hopefully many more to go. Thanks so much for the honesty of your posts.

--faithHGL
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Thank you so much for reponding to this thread.  

I am so sorry to hear of all the pain that you are in!!  It really is so horribly painful and so often we feel alone.  Others really don't get it;  they can't and sometimes I think they don't want to.  I think it is scary to them, they don't want to face their own mortality.  They are just plain terrified.


YOU ARE NOT ALONE!!!  We are here with you.  Many of us here are up all night long, unable to sleep in pain.  It's not good for you to be islolated.  Everyone here is so supportive and kind.  Is there anyone there that cares about what you are going through?  Do you have a good PCP that is helping you find answers?  

Do you have to work right now?  It sounds like you are too sick.  As far as looking for employment, I wouldn't tell them what is happening.  It's just too risky, plus you may need their insurance.  

As far as the driving after the spinal tap---I'm a pretty tough and also stubborn.  Those can be good qualities and they can also be obstacles.  

Yes, it is a huge deal that we make it through the day.  I think 'showing up' is 90% of the battle.  Just remember that we are all in this together and when you have to go through something really tough---think of us---we are behind you.  We are cheering you on!!  You also are very honest!!

We will make it somehow!

lois
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;-) Wasn't it Woody Allen who said that 'turrning up is 99% of success'??

I'm so glad we have this place - as you say Red, isolation is not good. Now we know there are many more good people out here suffering the same sorts of things. I truly thought it was just me until I too started hunting around the interwebby a year or so ago.

Yes, I do think that we have just cause to be proud of the way we graciously bear our illnesses in the face of sometimes quite abysmal medical responses and widespread dismissals. Go Limbolanders!!

The best thing is that we have each other...we know what we go through and are humane and kind to each other here. It goes a long way to restoring my faith in human beings. Of course though, it would be great just to have a proper dx and be able to get proper treatment and just get on with life....

PS faithHGL - I too know the dreadful situation where doctors' lacksadaisical failure to dx puts you in a situation where you have to bend the reality in order to get a job or benefits or whatever. I absolutely loathe that doctors have put me in this position - and made a dishonest woman out of me (even if only by omission).

sammxxx
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Hi Lois,
Thanks for your encouragement!
I'm really not totally alone; I just feel that way sometimes. My husband, parents, and youngest son (19) are very supportive. Its just that I am tired of having negative replies when they ask how I'm are doing. I don't like to be this way. I'd rather not have to deal with these troubling, painful problems at all and I would ignore them if I could. I'm finding that I just don't tell my husband all that much about how my day really was. He's a bigger worrier than I am, and, like a typical male, would like to solve the problem. His way of doing that is by trying to tell me what to do. Arrrggghhhh.....   You are so right that isolation is not good. For me, some of it is self-imposed because I really don't want to share this with friends. Some of it is because I'm not supposed to drive. I do drive some anyway. (I'm not so good at following the rules.)
A good PCP? I guess there are some out there. Oh, cynical me. I like my neuro, she just doesn't read my file or test results, or prepare in any way to see me. So, part of my office visit is comprised of watching her speed read bottom-line results. My GP is an internal med guy -- haven't seen him since I left the hospital. I'll go back to him after I get to a rheumatoid doc.  

I'm not working right now; that's a huge source of stress for me. When I'm honest with myself, I know that I'm not well enough for a full-time job. But, maybe part-time? Or, freelance? On the positive side, I've been helping a relative with a big project she's trying to get. I wasn't sure that I would be capable of the type of thinking and writing this kind of project requires. You just don't know how relieved I am that my brain continues to come back online!

Hey sammxxx,
I'm trying to remember who said, "I reject your reality, and substitute my own." I'm thinking it was a character on a TV show or movie. So, that in itself would be a reality bender. Do we attribute the quotation to the writer or the character?

--faithHGL





  

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thank you, Lois, for finding this thread for me.

It hurts to know that so many of us are treated this way by our friends and family.

the only person that knows is my husband, and I try not to even say anything anymore..if I tell him I don't feel well, he actually gets angry.

He thinks I make myself sick to get attention or so I do not have to deak with other problems we have.

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You're so welcome!!  This a good thread with lots of great people as you already know.  You are in good company.  Don't let your family get in the way of you getting help and a diagnosis!!!

You are very important!!!

((((Hugs))))

Red
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a bit of history: my neuro suspects that i might have a progressive myoclonic epilepsy called lafora disease and if he's right about that i have approximately 10 more years on this earth. the only way to confirm it would to have a brain biopsy done and he doesn't wanna do that just yet until he gets more evidence that points to the disease (amazing how they always want you to get worse before they decide that it's time to try and cure you) he told me this back in march and i have kept a positive attitude til recently when i've just been feeling down and out and i've feeling pretty negative as well. they are treating one of the symptoms, the myoclonus, with medication but everything else (speech problems, memory loss, rapidly deteriorating eyesight, headaches, tremors) is left to just manifest itself without anything being done about it. so lately i've had this whole attitude of "what if i really do only have 10 years left, why am i wasting my time doing what i am doing now? " i've had this whole bucket list since i was back in high school and at the moment that keeps on popping into mind whenever i'm not busy with something else.

so i decided, in light of my new attitude towards life, it was time to try speak about what's going on to people that are close to me.
- my parents are crossed off that list immediately. my parents are divorced and  i live with my dad. he and i have never had a parent child relationship, not for my lack of trying, he literally is just there to provide the bread on the table. my stepmom is literally the wicked witch of the west so there is no way i'm going to her. i've tried my mom in the past but she really doesn't understand what i'm actually trying to get through to her no matter how hard i try. my stepdad just doesn't feature in this picture.
- i'm tired of trying to speak to certain friends about this because they just brush off my worries or they make me the punchline of every single one of their jokes and that really is frustrating and it actually p*sses me off as well
- since this started last year, i have had a lecturer that i have been kinda close to who i can go chat to. the thing is that they're lecturers and they firstly only have limited time to listen to your problems and secondly you can only open up to them to a certain extent, i don't think it would be appropriate to share everything that's going on in your life with them. i must admit though, they have given me  the best advice regarding studies and just life in general

i made this friend at the beginning of the year and since then we have become pretty close so i thought that maybe it would be a good idea but i couldn't have been more mistaken. when i tried to speak to him he told me that i'm being stupid and my ideas are absolutely ridiculous. i was looking for some support and i was just met with animosity and a plain disregard for my worries. it's incidences like this that reminds me that there's no point in trying to speak to "normal" people because they never understand what you are actually going through. so until i have proper answers where i can shove under their noses and say "i told you so", i'll just stick to forums like this and my virtual friends where i have the understanding and support that is needed to get through something like this
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I'm so sorry that happened to you. Sometimes people are uncomfortable hearing about things they can't fix. They often respond with dismissing things or humour. It doesn't help. It hurts. I think the response is more about that persons immaturity than about you. At least in a place like this where other people have similar experiences they will give understanding.

I wonder if a counsellor at school might be able to steer you somewhere there are real kids going through adult issues like you are facing.  If there is no group in your area, at least  the counsellor will step up. People generally go into that field because they want to listen and help.

Be gentle on yourselof
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theasian,  I'm so sorry that you are having such a rough time!!  When you talk of 'lecturer' are you talking about a professor?  We call teachers at the university professors.  Anyway,  it's really hard becuase they can only help and support you to the extent of their position.  I would really work at not talking to people about your health becuase they are hurting you so much.  Something I did was start talking to a therapist.  She has supported through all of this and I have been able to hear me all the time.  Might help,  just a thought.  :-)

Red
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thanks for the advice guys. i think that i'm just gonna give up with trying to speak to family and friends, it's not worth effort anymore, it just frustrates me. i'll stick with the chatting to the lecturers/professors though because i actually feel better after chatting to them. we have these student services which includes the services of therapists. i tried going there once but i didn't like the therapist they assigned me to which becomes a bit of a problem because once you get one they refuse to change it. so that's really frustrating as well. i guess i'm just gonna have to hang on until i meet 'the one'. lol
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Thank you, all of you. I'm a 39-yr old single mom of two, I work nights as an RN in Arizona in a cardiac ICU. I feel like I'm going crazy or at least am being viewed that way by my coworkers and some friends; I have always been the strong healthy one and have stayed quiet about this for some measure, but people SEE some symptoms, and ask. For over a year, I have had intermittent crossing in my right eye, double vision, and my vision even kind of "dims" sometimes in that eye. I blamed it on working night shift, got a weak little pair of glasses to help "exercise the weak eye", and went on. I have now had a numb patch on my left lower leg, about 6" x 6", for 6 months or so. It is constant, except this week has started to get sharp shooting pains up and down through it and then are immediately gone, and a couple times felt like it had bugs under the skin. I've also gotten to where I can't really cough without gagging, and some foods /textures also cause gagging and retching. I NEVER had this be an issue, nurses have titanium tummies! ;) I have occasional "hot flashes", but they usually only happen after I've started moving a bit more, or getting up to the shower, and then I feel like I'm melting from inside out. Sometimes I will have goosebumps at the same time as red splotches on my skin and  dripping sweat.  Hormone levels, vitamin levels, everything was normal and good on blpodwork. I am so tired sometimes that i have difficulty holding my arms up to shampoo in the shower. Finally, I have had spacey moments where I cannot think of simple words or names. I either put in the wrong words, or blank out completely. I have forgotten my bank account number (of 7 years). The most scary thing i did, is i went -on a normal day, casually and without thinking about it-to go check my mail (small housing development with group mailboxes)...I have lived here for 7-8 years. i got there and had no remote clue which box was mine. I tried to reason it out, work it through, but finally just ended up trying my key in every lock until a neighbor walked up so I left,; it took me three days of going back to actually get it right. That was scary.
  I saw my PCP , who stated she wished to rule out MS. I was referred to ophthalmology (only saw optometry before), who said the same thing without knowing my pcp had said it too. Ophthalmo ordered an MRI, but seemed unsure how reliable it would be since at the time I wore braces. Other nurses and neuro-type friends didn't feel the braces would matter. My brain MRI was negative, So PCP seems content to drop the issue...  I however am the one feeling overwhelmed, and while not debilitated by any of it, I certainly am slowed a little. Plus, I simply don't feel well. "Something" just doesn't feel right. Any words or thoughts would be SO appreciated!!
Thank you!! ~Jen
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In many of my post I have spoken of my husband and how hard me being in limbo land is on him as well. He always says he wants to know everything I am going through but I know that isn't always true. At times I feel he doesn't believe me. At other times he tries to care for me to much. I don't want my independency taken from what. But I want him to get that I do sometimes have to slow down.

It is hard cause I do believe that sometimes my family wonders if I am nuts. I know they aren't always understanding at work. I have tried to ignore my sxs, but when a dizzy spell hits out of no where. There is no ignoring it. Or when a sharp unexpected pain hits how can you keep from saying something or being stopped in your tracks.

So, how I have tried to handle it is by finding that common ground. I can't hide all my sxs. But the ones that are minor I try not to pay attention to. I tell others only what is necessary. Like at work if I am getting dizzy spells that can be dangerous so I let others know. But if its just a bit of pain I just try hard to cope through. At home my husband gets told what I think he needs to know. But my husband can tell when I don't feel well.

Honestly I guess it's just a balancing act. There are sxs others need to know about, and family should get to hear about test results. But you shouldn't dwell on answers that aren't conclusive. Nor should you dwell on your sxs. Instead you should fight for your life, and having as normal of one as possible.

I haven't gotten a chance to read the other post on this topic yet, but I believe this is one that effects everyone in this forum. Relationships and limbo land are hard to mix. Praying for everyone in this forum,

Kimberly
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When he wasn't sure about my vague neurological symptoms, my neuro suggested I keep a symptom diary. At first, I used a small spiral notebook. But it was too tedious to review it and I couldn't see any trends.

What was very useful for me is a spreadsheet where I listed symptoms down the left and day of the week across the top. You could rank them from 1-5 or 1-3, whatever is easier for you. I printed out a new one each week.

It adds a LOT of credibility when you tell a doctor about your symptoms. It also helps you and the doctor to see trends, if any, or to know when a new symptom started, or when was the last time you had a symptom. You are much less likely to be dismissed as a psych case with such a log.  (Psych cases don't usually keep a detailed log.)

It can possibly help with a diagnosis. For example, if symptoms come and stay for a period of time, it is more likely to be MS. But in Lyme Disease, symptoms can wax and wane and come and go repeatedly.

There was a surprising benefit to my keeping a log. It helped validate my symptoms, even if only to myself. I recorded them without having to describe everything I was feeling to my family. It also helped me realize that I was actually diminishing my symptoms. I think it was because I was scared, and I didn't want to believe it was serious. I also didn't want my husband or doctor to think I was a hypochondriac.  My mother was diminishing my symptoms in our phone calls, too. I think she just didn't realize how bad I was getting and how many symptoms I had, as well as not wanting to think I had anything serious.

Anyway, this isn't an answer to anything, just a suggestion that might be helpful.  Keep us posted!
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