new member of a club that we all wish we weren't in....

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new member of a club that we all wish we weren't in....

Postby Kraftwerkgrl » Wed Jun 20, 2007 1:16 pm

Hello. My name is Tansy. I was told that i got stuck with Syring oh about three or four years ago. The first doctor wanted me to use shoe inserts for my left leg that felt it was on fire. three doctors later they figured it out. at first i would just have attacks that would leave me in lots of pain for a week or so. but over the past few years its more constant than before. i always hurt. winter an rain make it worse it seems. what scares me is that i just dont know how much worse it will get. and now i seem to have a pain when i breathe that isnt asthma...it feels like its in the back left lung (mostly my left side is messed up with pain only). I dont know what to expect and just changed jobs so insurance is going to be a new battle (i am sure it will be better than my HMO that i had) but the doctors here just dont know anything. They cant even tell me why I have this. To be honest, it just really sucks to be young and to feel like living my life is a battle with my body... so yeah. hello
Kraftwerkgrl
 

Postby precious » Wed Jun 20, 2007 6:12 pm

Hi Tansy,
Welcome to the board. You will find that there are many caring and supportive people on this board that can share alot of experiences, pains and frustrations with you. Do they have you coming in and watching the progress of you strinx every year or so? Or do you so a Nuerologist? I can realate with feeling to young to fell this way I am 28 and feel like I should probably be 50(no offense anyone else)Welcome.
~Precious~

SM T-6/T-12 8.2 mm
Only you decide how bright your day will be!
precious
 
Posts: 68
Joined: Wed May 16, 2007 10:53 pm
Location: Utah

Postby hartagold23 » Wed Jun 20, 2007 9:47 pm

Hi, Tansy

Welcome to the board. I think anyone here will tell you to see a specialist. Not many doctors know much about this condition. If you tell us your location, we may be able to point you to a specialist.
Let us know...maybe we can help.

Barb
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
hartagold23
 
Posts: 138
Joined: Wed May 16, 2007 4:38 pm
Location: New Hampshire

Postby Sandy » Thu Jun 21, 2007 10:39 am

Hi Tansy,

And welcome to the club we none want to belong to. I loved the way you put that, so true isn't it.

Please try not to get scared, it won't help and it'll make your pain and symptoms worse. Although I get scared, sometimes, too. Anxiety is not my friend.

But people here are and being able to talk to people with the same dx I have is a wonderful comforting thing to have in my life.

Again, welcome.


Sending love,
sandy :D
Sandy
 
Posts: 1150
Joined: Wed May 16, 2007 2:44 pm

Postby Kraftwerkgrl » Thu Jun 21, 2007 11:16 am

I did find a really good nero- in detroit (i live in grand rapids). but he more or less told me that he wouldnt do anything about it. that was about three years ago. my normal doctor told me that if i didnt want mri's i didnt have to have them. which i am sure is wrong. i just lost my insurance for now (changed jobs) so i am hoping that the new insurance will cover more of the costs.

i think what i struggle the most is that i look fine. so people tend to not understand. 25 and back problems, people dont realize that it goes a lot farther than that. at least if it was cancer people dont argue with you. my boyfriend gets really frustrated because he doesnt seem to understand that being poked when he is trying to be funny hurts me. then he gets mad that he hurts me. but he also doesnt tend to have much understanding about pain. he has more or less said that i will hurt more or less my whole life and i should deal with it.

it is good to know there is a group of people going through the same thing. thank you.

-tansy
Kraftwerkgrl
 

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Postby sparks42 » Thu Jun 21, 2007 11:36 am

It's definitely frustrating that others can't understand what we're going through...because we [i]appear[/i] to be fine from the outside.
SM can cause all sorts of strange pains..I'm sure you know that already.
I'm a 20 year old girl.....so when I'm in pain.....or something's going on with my back....people think I just complain too much....and tell me I gotta learn to deal with it better. And People will say things like "everyone gets aches...you just complain about it too much...you worry about yourself too much......learn to deal with it better.......

My heart goes out to ya...I understand where you're coming from.
- Syringomyelia, Scoliosis, Spinal Fusion, no CM
- 24 year old female
- London Ontario Canada
sparks42
 
Posts: 189
Joined: Fri Jun 08, 2007 1:17 pm
Location: London ON

Postby kiminfla » Thu Jun 21, 2007 12:33 pm

Welcome Tansy. Hopefully with the new insurance you can get to a dr that understands these disorders and can help you. We're here for you! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
kiminfla
 
Posts: 1348
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Postby Sandy » Thu Jun 21, 2007 1:05 pm

Let's see if I can do this...I am very computer handicapped!

www.butyoudontlooksick.com

It's a very good site.

love,
sandy :D
Sandy
 
Posts: 1150
Joined: Wed May 16, 2007 2:44 pm


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