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    Old 12-08-2007, 02:06 PM   #1
    Hallucination
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    Unhappy extremely weird problem

    ok something is terribly terribly wrong with my body and it feels like im not going to be living much longe. and ive never really been able to explain it or put it into words for doctors or my parents and i know im not going to be able to explain it well at all right now but i need to try because it dosent feel like im going to be living much longer. ok basically i was having horrible mind boggling back pain and electric pain down my legs. i get an MRI of my lumbar and it turns up spinal stenosis which is what im currently being treated for in physical therapy and what not. but the thing i have realized the bone struture of my body is completely wrong and lopsided. when im sitting my head is constantly looking and the ground and the bone at the top of my back neck feels crooked and pointed down so that its hard to look forward. my ribs go really far down and when i breath in and out it feels and looks like they are barely connected to by body. my hips are crooked in a way that for me what feels like standing straight is actually standing so that my hips are twisted to the left and i am facing kinda left. now perhaps the weirdest thing is that im pretty sure my body has been pretty messed up my whole life and the reason im starting to notice it so much now is because my body and my bones actually move. yes you heard me im not crazy theres times wheni feel extreme pressure in certain parts of my body and i push really hard and my bones actually move and snap into new posistions and make a really loud noise similar to cracking knuckles. now i have really bad pain in my throat and if i press my finger at where the jaw is supposed to connect with the neck on the right and left sides i can feel and kinda move around my cheeck bones. there has actually been a time wheni looked in the mirror as i watched my cheeck bones loosely move around and gradually shift posistion. my face has changed shape entirely but very gradually over a course of time and my physical therapist told me that he cant beleive how much my body has changed since i startd seing him. if you took my body one year ago to my body today they would be completely different. my fingers were loose and long and i basically has no shoulders as they were really rounded and high up. uhh right now my shouldersgo high up but not far back enough at all so it makes t shirts fit really weird like theres a bunch of space in the back. and all the while my spinal cors is very rounded and has extreme pain. it goes out to far but over this course of my body "transforming" it has started to snap in more. currently these past couple weeks my week my neck has been in extreme pain and if i tilt my head all the wat left or right it will make a weird snapping noise and it will feel like my throat is becoming tighter. my voice constantly changes due to these throat problems. basically my jaw is not connected to myneck at all on the left or right side. my left eye and the whole ;eft side of my head for the matter is in pain and it almost feels like my eye muscles arent strong enough to keep the eye in place as its hard for me to move it. these body transformations also have mental efects but i dont want to get into that or any of the other crazy stuff for that matter because i know i already sound like a crazy skitzo describing these medical problems. i feel like im not gonna live much longer due to the fact its really hard to breath all the time and on the left side my ab isnt very well connected but everything is just so hard to explain and im so confused on what to do besides just accept that my body is so abnormal that im gonna die as it tries to reposistion itself back to the way a body is supposed to be. i did not explain that well and left out a lot but im really scared i dont know what to do.

    if anybody has any questoins for me i will answer them to try to prove im not crazy and that my body structure is terribly wrong.

    i dont want to diee...
    but things are getting intense my bones are moving a lot the last couple dayshelp

    edit: sorry thats such a mess but im shaking cause my bones do that and i cant beleive this. i cant beleive it.

    Last edited by Hallucination; 12-08-2007 at 02:07 PM.

     
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    Old 12-08-2007, 03:48 PM   #2
    Cassie98
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    Re: extremely weird problem

    Hello,
    First of all, if you think you are going to die soon, notify your parents or caretakers immediately. Go to the nearest Emergency Room, or, call 911.

    Keep a copy of what you typed on this board so you won't have to repeat it. If you truly want help, then you must go to your parents and the professionals who can help you. If you are physically ill, the doctors of the ER will be able to help you or call in those who can. If you are psychiatrically ill, it can also be determined by ER doctors and Social Workers. Does it matter to you if you are physically or mentally ill? What matters should be that you get help the help you need, now.

    Last edited by HBMod07; 12-16-2007 at 10:23 AM.

     
    Old 12-08-2007, 09:20 PM   #3
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    It sounds like you need an overall evaluation by an orthopedic physician. He/she can evaluate you and do any xrays or film studies to check on your body's alignment, etc.
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    Old 12-09-2007, 07:42 AM   #4
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    Hi there Hallucination,

    First of all I do not think your crazy!!!

    I think I have heard of something simmillar while watching aomething on the DHC.

    I think that keeping a copy of this post is a start because you did a great job of explaining what was going on with your body. NO ONE is more in tune with your body than you.

    I would suggest that you tell your parents exactly how you feel and get in to see an orthopedic doctor asap. The fact that it is hard to breathe is very concerning and should be addressed ASAP.

    Because you describe that your bones move and pop I feel that there could be something going on that may be causing the trouble breathing. I am not a doc so I don't have any idea of your troubles or anything but I can offer you some support here.

    Please do not let the thoughts of people thinking you are crazy keep you from trying to explain what is going on. This is your body and your life and if you feel that this needs attention than please do not take NO for an answer form anyone untill your satisfied with their findings.

    Hang in there!!

    Keep us posted on how your doing....

    Hugs Chrissy

     
    Old 12-09-2007, 08:52 AM   #5
    kelsey1
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    sweeheart,
    I am a mom of a girl that is 13,and i would never think that she was crazy if she said this to me ,also i too was born with spinal stensis and i always had that same feeling when i has about your age and and even alittle earlier i had it for many years,your body is changing because #1 you are young #2 you have spinal stensois,I do remember have alot of wried thought when i was young don't remember them now(they are gone now)not to say that you should ingonre anything and leave things out you can only be help if you tell everything,your feeling aren't crazy they are just that your feeling,along with others things going on in your body .If it is real to you THAN MAKE NO MISTAKES IT IS REAL.PLEASE TELL YOUR DR AND PARENTS EVERYTHING, WE ARE ALSO GOING TO BECOME ,AS I FOUND OUT AN EXTENTED FAMILY!!!Because sometimes we need to talk to people that are going though the same stuff for suport and we will be here!!!!!!!!!Please talk to parents today,keep us posted you are not crazy and never let ANYONE tell you different...
    kelsey( I will be here!!!!!!!!!!!)

     
    Old 12-09-2007, 10:19 AM   #6
    Hallucination
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    thanks. i feel like a freak how do i explain this to parents i feel like a mutant or something and im a little bit more calm right now. for a year straight the nurse my therapist and a doctor kept telling me im depressed and nothings wrong then i insisted to get a mri and thye found the spinal cord thing so i think i need to find some help.

     
    Old 12-09-2007, 01:31 PM   #7
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    Medical problems sometimes are hard to figure out. Yes, sometimes we all feel like we are going crazy when we can't figure out what is wrong. I don't know who the doctors your parents are taking you to, but it might be time for you to go some of the best experts in the country. To have these problems at your age is difficult.

    Not sure where you live, but there are some good resources across the country for difficult cases. To name a few in each area: Mayo Clinic (one in Arizona, Minnestoa and Florida, or the Cleveland Clinic, Hospital for Spinal Surgery New York, Mass General in Boston, Duke in North Carolina, Johns Hopkins in Baltimore, UPMC (University of Pittsburg Medical Center), UCLA or Stanford.

    I am not saying you have a muscular dystrophy diesase, but the way you describe it, some of their resources might be able to help you. There are local offices all over the country and if you call for help they can advise you of how to find top drs in orthopedics, muscular, neurology in your area.

    It is good you are listening to your body, keep communicating with your parents and dr. Take care.

     
    Old 12-09-2007, 04:08 PM   #8
    Hallucination
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    does it make sense my doctor wont give me pain medecine cause im too young? i cant go to school and its hard to get out of bed and be normal.''

    and i live in seattle. im going to a pain clinic at childrens hospital which is really good soon. maybe i can ask them to refer me to an orthopedic there.

     
    Old 12-09-2007, 09:28 PM   #9
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    It isn't uncommon for some dr.'s to shy away from giving pain meds to young people, there are plenty of older people who have trouble getting meds as well. The pain clinic should be able to help you.

     
    Old 12-11-2007, 06:16 AM   #10
    kelsey1
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    i still got told that still i found my last dr and i am 34.So,i bet it is hard on you just keep trying to find the right dr he/she is out. we all had to do this reguardless are ages. Dr just don't want to write but you will find the right dr for you don't give up.Also,just sit your parents down and maybe first let them read this ,the post you started, that will start things,you pick up there just say what is in your heart ,everything .Tell them you need there help now more than ever. keep us posted kelsey

     
    Old 12-12-2007, 03:23 PM   #11
    Hallucination
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    ahh this is so harddd. its taking weeks to get me into a pain clinic or anything like that and this stress is eating as it feels like im dying.

     
    Old 12-13-2007, 05:00 AM   #12
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    Good Morning Hallucinaction,

    I am so sorry that the docs are not prescribing pain meds for you at this time. There is so much contraversy with pain meds these days.

    I have learned over the past 3 1/2 years that sometimes the pain meds don't help and I must tryo to do something else to settle my nerves and my body because if I focus to much on the pain it will actually make it worse sometimes.

    Here are some of the things that I do to try and relax and distract from pain..

    Hot shower sometimes helps especially if I can not sleep
    Ice of course, but I am always cold so I do a sessioon of heat afterward.
    Sometimes I just have no other choice but to lay down with soft music or quiet and just try to relax.
    I sometimes go to a natural hot springs pool.
    Sometimes I just lay on my bed or on the couch and pet my cats and concentrate on what their fur feels like to try and distract.

    I understand how scared that you must be!! I call it Fear Of the Unknown!!
    Darn-it it is so hard to realax when you do not know the source of some or all of your issues. I really do feel for you because it must just make it all the more difficult to deal with when your so young.

    Please try to hang in there. Treat yourself kindly. Dont worry because your not a freak or anything! Just a young woman trying to work through her health issues the best she can.

    This board is a good place to talk with other about your fears and hopes. We understand, are everyone is very kind.
    I think that you have already taken a positve action by opening up to the people on this board. Talking about pain and fears etc. is good because you will start to be able to process this stuff.
    Listening to other people and their stories is a way to see that you are not alone and you do not have to go through this alone.

    Some cities have pain support groups at local counceling centers or hospitals or clinics. You may wnat to try that to or even a cognitive behavioral therapist to help with the stuff and jargon that goes on in the head! I went to one and she really helped me to sort things out and to learn new ways of thinking and new ways to be assertive with others so that I can explain to them wht it is that I need.

    Hang in there girl..I hope that you have a good day...
    Chrissy

    Last edited by skych; 12-13-2007 at 05:07 AM.

     
    Old 12-13-2007, 06:20 PM   #13
    Hallucination
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    thank you very much for the kind words they do make me feel better
    and despit my perhaps feminine typing im male

     
    Old 12-14-2007, 04:24 AM   #14
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    Re: extremely weird problem 16 years old (please dont think im crazy)

    Oopps!
    So sorry! I am so silly!

    How are you doing today? I bet that going to school is very hard. How do you manage to get your school work done?

    I am almost 38 years old and in college. At this time it is very hard to sit through long classes with my neck issues.

    Maybe I should use you as a confidence pusher for myself. "If he can do it then so can I".

    I am excited because today is the last day of classes and I will have 35 days off.
    I am actually hoping to have surgery while I am off. I will se the surgeon today and let eveyone on the board know.

    So how are you doing where your parents are concerned? Have you tried to talk wiwth them since you have been posting on this board?

    Well...hang in and we are all here to help as much as we can.

    Chrissy

     
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