Diary of a Limbolander

Dear Friends,
It's not often that I feel the urge to write anymore. I used to want to be a journalist. I've written about the people I've known and the places I've been. I've written about how people felt, even though they wouldn't admit it. Today, It's those of us that are stuck in limbo. And here's what I really want to say:

Dear Doctor,
I'm sorry that I don't seem like a normal, easy patient.  I'm sorry that it's not easy to figure out. I really hate that I have symptoms of which many diagnoses are possible. I'm sorry that I present as a patient that might simply just need psyciatric help.

I hope that I am not Crazy in your mind, but that there really might be something wrong. If you look at me, I am simply a 33 year old caucasian female. Healthy. No major issues that could really be feasable. If you take a closer look, however, I shake, I twitch, I jerk and I have severe unexplainable pain that no one can see. My eye is almost popping out of my head several times a week. If I my feet aren't stabley on the ground, they shake. My arm jerks. There is a baseball moving around in my neck and sometimes my bones feel like weights. My bladder does it's own thing and I simply go from constipated to diareah in hours. Then it starts all over again. I have crazy redness on my face and splotches that not even a dermatologist can tell me what they are.

My ANA is negative.
My labs are clean.
I take antidepressants because my symptoms make me depressed.
I don't sleep - have had a sleep study and am waiting for results.
My Headache protocol says I don't have a brain  tumor or an anureuism.  

I'm not crazy.

Something is happening to my body and you can't see it. How can I show you? How can I make you understand? How can I return to being the person that I was??? It came all the sudden, and now it won't disappear.

I was well loved and successful in the workplace. Now I just try to get through a day.

I would look spiritually, but I've found no comfort. I've  felt a strange connection to relatives lost, but cannot give a resonable explaination.

Please, doctor help me. Please help my friends that are lost in the same land. PLEASE know that we are good, honest people and just want to be well again.

My love to you all,
Heather

[saveone]

Wow, me too

[rendean]

Dear Heather,

I can feel your frustration and the raw emotions you are experincing. Not that it helps but I am diagnosed and still have some of the same feelings.  Knowing the name of the disease that ails you doesn't  dismiss the feelings of frustration and the desire to return to simpler times. Times when you fell asleep easily and awoke refreshed. Times when you had no physical worries and concerns about what the next symptom might be and when/if it will going away. Times when no one doubted your sanity because you didn't have an invisible disease.

I'm sorry you are having to suffer through all of this but know that you are in good company. Know that we are here to listen and share your frustrations. We are a shoulder to cry on, a place to laugh at ourselves and a safe harbor to come and express yourself.

Wishing you well,
Ren

[puppythreads]

I am so sorry you are going thru this, and I too feel your pain as I could have written your post about myself.  

Hang in there and continue to share your feelings with those who really do understand. This is a wonderful group of people to talk to.

Hugs,

Karen

[Sarahsmom46]

Your letter brought tears to my eyes.  I got teary because I know too well the pain you are going through.  I've been there done that and heck, I am still dealing with symptoms that no one but me seems the least bit interested in getting to the diagnosis with.  I have come to learn through my difficulty in getting properly cared for is that for all the doctors know about the human body and diseases, that there is so much more that they don't know.  What is known right now is just a couple drops in a big bucket.

I know and trust that you will find your answers, but hopefully those answers will come before you get worse.  Hang in there best you can while you search and keep moving forward.

Love you Heather.

Julie

[Lulu54]

Heather,
Often I refrain from commenting on such personal writings from people in limboland, because I am not one of you.  I am constantly thankful that even though I have MS, I got that dx quickly and in the most efficient manner.  But your open letter moves me to write.


Your apology for not being an easy patient is one that should never need to be given, but I can't help but feel so many of you are dismissed because you are not easy.  You have hit a key point and knocked it out of the ballpark for a home run on that first pitch.  

You're not crazy - and I hope that your doctor never gives you the impression that is what the diagnosis might be.  The invisible nature of our syptoms (symptoms) is hard enough for us to understand, let alone be doubted by those we trust to care for us.

I hope your answers will come soon - know that you are not along and all os us, dx'd or not, are willing to walk this journey with you.

my best,
Lulu

[wadeheather]

Thank you all for your responses. I had that letter in my head for two days and finally had to write it down.

Lu, my dear, no one appreciates your input quite as much as us limbolanders, I am sure...we  - I appreciate you.

I have my next neuro appt tomorrow. And I pick up my sleep study on the way...Wish me luck.

Love you you all.

[rendean]

Wishing you luck and a compassionate, caring visit with your neuro.

Hugs,
Ren

[shawnie31]

Your letter made me feel normal... It's so strange that we all suffer in silence the same way waiting for our day that someone will figure out what is causing our strange and abnormal symptoms.

Good luck with your neuro tomorrow. I have my sleep study next week. What is the purpose of a sleep study anyway?? Do you know what it's suppose to show??

Take care fellow limbo-lander!! Hang in there.

Shelley

[puppythreads]

I just had a sleep study done, mainly because I have been waking up gasping for breath.  My primary ordered the study even though the Neuro (not a very good one) says he doesnt think that MS causes difficulty breathing or sleep apnea.  

Well, someone in this forum cut and pasted an article from the National MS Society website the other day that says indeed MS causes difficulty sleeping because of leg twitches, difficulty swallowing when asleep, SLEEP APNEA, and BREATHING DIFFICULTIES.  Boy, I would like to wring my Neuro's neck.  He either wasnt listening to my questions or didnt know the answers..  I want to call him and tell him to check out th MS Society website if he is goiing to continue to treat or I should say mistreat MS patients.  In my case, he sort of made the Dx then took it back.  

Sorry to vent but it makes me upset to hear about all of us who have had to live in limbo for so long.  I really think that many times if the Docs were more willing to listen and to do their homework, they could arrive at a Dx much sooner.

So anyway, that is probably why it is important for sleep studies to be done, I think I was answering Shelley's question here but wanted to point out the importance of you study as well.

Best to you all!

Karen

[ozjohn]

Hi
my heart goes out to you all
It is 15 years since I had my first MRI and although I have been told I am atypical
the neuro did not want to diagnose me as m.s ,because her reasoning was once labelled forever known
As I have steadily got worse I have become sadder and more desperate
my children and partner have been great but my inability to do the tasks that I once found easy is depressing
I have a walking stick now but am embarassed to  use it in public and have a disabled parking permit but seldom use it as I figure that there are others worse than me
Work is becoming harder and I am finding it more difficult to use the keyboard.
I wish the neuros of the world would read some of the comments on this site
One day we may all be out of Limbo-even the Catholic church got rid of it
fondest regards
John

[wadeheather]

The sleep study was annoying, to say the least, but productive as far as I can tell. I haven't actually talked to the sleep doc yet,  but the tech brought up restless leg, periodic limb movement disorder and got me an apnea mask (which makes me feel like I'm suffocating...). I'm hoping the report shows something in all of that that the neuro can find useful in helping me today. It won't hurt to have it done. If someone thought you need it, do it. For me it was my hubby.



Heather

[PastorDan]

Wow, there's so much good stuff in this thread, I wish I had tiime to respond to it all.

Heather, for me, nothing in this 16-months-and-counting journey has been more thrilling than to hear the neuropsychologist affirm what I've long suspected: that the only emotional component of my illness, whatever it might be, is the emotional distress caused by the illness, especially the uncertainty of it all.  Stress, emotions, moods, whatever -- none of that caused my illness, nor any of my symptoms.  He went further, saying that I'm actually in quite good shape psychologically, except for a few specific quantifiable limitations directly attributable to some kind of disease process within the white matter of my brain.  In other words, I'm right!  I'm not nuts; there's actually something wrong!  What a relief that was!  I hope and pray that you can find similar affirmation.

God bless all of you.

[StormyRenee]

I am/was a 35 yr healthy female with no history of serious illness.I have been dealing with this since Jan 09' and have been pretty much frustrated and confused the entire time.I too have had skin issues and also menistration problems. I have been tested for every autoimmune disease know to man and all were negative (except positive ANA). I have been sent to a shrink because one doctor thought I was crazy and  anorexic.I got down to 102 lbs in the beginning of all this.I even saw a neuro when I went to the ER (thought I was having a stroke but turned out to be atypical complex migraine) he thought I was insane. Finally after 6 months of persistance I got a diagnosis of TM from a great neuro.It was a great feeling for some one to tell me I was not crazy and there was somthing actually wrong.
Though I am still in Lmbo I am making my way closer to an MS dx.15 Brain Lesions and pretty much neurological chaos from head to toe puts me in the high risk catagory. I had the MS talk with my neuro about possibly starting injections.I go back to see him in Feb 10' to see where I am at.
Do not ever give up on yourself. If you have to see a gazillion doctors then do it.
Take Care....

[wadeheather]

I am actually seeing a good Neuro now. He is working his way through some deductive reasoning and slowly crossing things off the list. I have been dx with RLS, PLMD and sleep apnea. I am trying to get an EMG scheduled for early Dec.

It's nice to have a place to be able to write these things when we feel them though. I felt a huge weight lifted after I wrote this that night.  Just needed to share.

Thank you for the kind words!