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OVER 9000!!!
Aalia
CyBorg
User ID: 117675
09-22-2012 05:23 AM

Posts: 3,078



Post: #1
OVER 9000!!!
My CPK : /

and this time kidney damage and my liver enzymes=elevated

talk about starting all over again with no answers

isolated doesn't even begin to describe how I feel because no one can tell me what "this" is

12 minute cardio exercise caused this

not an earthquake crush injury

not a massive heart attack

a cardio exercise caused my (now 4th) diagnosis of Rhabdomyolysis(in less than 2 years)

now I get to see a Nephrologist too (yay)

and have a scan of my spinal cord and brain to check for MS and Devic's disease(doubt I have this last one, first one maybe could be hope not but want answers but god I hope not)

alls I know?

I'm 32, not overweight, otherwise healthy, was in the military and never had a problem before ie: running, marching, drills, training etc but now...


my muscles are deteriorating and breaking down whenever the f*ck they feel like it, it's cause and effect--meaning the muscles I use or accessory muscles involved are the ones that seemingly "break" down after the fact and release these toxins, then causes kidney problems(at least with me)


woe is me right?


Am I being whiny? Well maybe I am idk but really I just feel isolated as f*ck---and just really alone---because every doctor I have seen is scratching their head and can't figure this out, no other patients like this meaning they can pinpoint the underlying cause where as in my case, they can not, makes no sense they say---and I've already been to John's Hopkins Myositis Center--no luck there! And I keep hearing "you're kind of an extra-ordinary patient" or "this is odd" or "we can't explain this" today even my Neurologist said "I just don't know what the hell this is" and all my scouring of the interwebs are a bust.

I put it on the back burner because of my kids, I focus so much on thier school maybe too much just because I really want them to do well but when I'm like told U GO TA HASPITAL NAO OR ALSE DYE(sic intended) I'm forced to think about my health because I can't really be there for them if I'm not "there" (here?) uknowwutimean

K end rant!

fml and my stupid looks fine on the outside rotting on the inside body


Tissue

oh and f*ck IV therapy(it is annoying, long and makes me swell, have to pee alot and bother the nurses to unhook me to go piss) but at least I'm not on dialysis--and I hope it doesn't get to that point

I've seen fistula's I don't want one :(
(This post was last modified: 09-22-2012 05:25 AM by Aalia.) Quote this message in a reply
xenoverse
Registered User
User ID: 70891
09-22-2012 05:24 AM

Posts: 9,731



Post: #2
RE: OVER 9000!!!
GET A SECOND OPINION.
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Angry Chicken
Registered Chicken
User ID: 109491
09-22-2012 05:26 AM

Posts: 1,089



Post: #3
RE: OVER 9000!!!
[Image: C414_505D2FCD.jpg]

The truth
[Image: 3170_5037A605.jpg]


http://www.youtube.com/watch?v=llDikI2hTtk
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LoP Guest
lop guest
User ID: 67012
09-22-2012 05:26 AM

 



Post: #4
RE: OVER 9000!!!
You really need a local support group. Please check with your doctor.
I am afraid that people on LOP will be mean to you and drive you over the edge.

I am very sorry for you.

But please do not seek comfort on the Internet.

Heartflowers
Quote this message in a reply
Vlad
Registered User
User ID: 91454
09-22-2012 05:27 AM

Posts: 31,386



Post: #5
RE: OVER 9000!!!
OP sing with a Beautyful SpiritCheer
You will feel fine!, if not com plain 2 appleHugs

http://www.youtube.com/watch?v=BJs77sHAV...re=related
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Psychonaut
lop guest
User ID: 118717
09-22-2012 05:27 AM

 



Post: #6
RE: OVER 9000!!!
Hugs

fwiw
Quote this message in a reply
Aalia
CyBorg
User ID: 117675
09-22-2012 05:28 AM

Posts: 3,078



Post: #7
RE: OVER 9000!!!
xenoverse  Wrote:
GET A SECOND OPINION.

I've seen so many doctors in the past nearly 2 years, and I've been to John's Hopkins I'm not sure what else I can do other than throw darts on the wall of genetic testing dart board and watch as my insurance refuses to pay for these thousand dollar tests

I had one genetic test done 1700$--insurance didn't over it.

I have teams of doctors spread across a couple states conversing, I've looked into the Cleveland Clinic because of their clinical trials and their research but my point---it's gone beyond just getting a second opinion heh :(
Quote this message in a reply
The Martini Maven
shaken with a twist
User ID: 120184
09-22-2012 05:28 AM

Posts: 28,870



Post: #8
RE: OVER 9000!!!
why the f*ck is this happening to you aalia?

you took RX drugs right and got complications...

you are young vibrant and healthy

you got kids family and yourself to care for

life is getting better

challenge the diagnosis and look for alternative treatments in the interim

Hugs

crap

you have a LIFE in front of you

and people who love you in real life and people who really care on this joint

[Image: 1d8e93c08c.gif]

7 days

[Image: 1d8e93c08c.gif]
(This post was last modified: 09-22-2012 05:30 AM by The Martini Maven.) Quote this message in a reply
Vegas
Your Master!
User ID: 102345
09-22-2012 05:28 AM

Posts: 19,815



Post: #9
RE: OVER 9000!!!
Aalia  Wrote:
My CPK : /

and this time kidney damage and my liver enzymes=elevated

talk about starting all over again with no answers

isolated doesn't even begin to describe how I feel because no one can tell me what "this" is

12 minute cardio exercise caused this

not an earthquake crush injury

not a massive heart attack

a cardio exercise caused my (now 4th) diagnosis of Rhabdomyolysis(in less than 2 years)

now I get to see a Nephrologist too (yay)

and have a scan of my spinal cord and brain to check for MS and Devic's disease(doubt I have this last one, first one maybe could be hope not but want answers but god I hope not)

alls I know?

I'm 32, not overweight, otherwise healthy, was in the military and never had a problem before ie: running, marching, drills, training etc but now...


my muscles are deteriorating and breaking down whenever the f*ck they feel like it, it's cause and effect--meaning the muscles I use or accessory muscles involved are the ones that seemingly "break" down after the fact and release these toxins, then causes kidney problems(at least with me)


woe is me right?


Am I being whiny? Well maybe I am idk but really I just feel isolated as f*ck---and just really alone---because every doctor I have seen is scratching their head and can't figure this out, no other patients like this meaning they can pinpoint the underlying cause where as in my case, they can not, makes no sense they say---and I've already been to John's Hopkins Myositis Center--no luck there! And I keep hearing "you're kind of an extra-ordinary patient" or "this is odd" or "we can't explain this" today even my Neurologist said "I just don't know what the hell this is" and all my scouring of the interwebs are a bust.

I put it on the back burner because of my kids, I focus so much on thier school maybe too much just because I really want them to do well but when I'm like told U GO TA HASPITAL NAO OR ALSE DYE(sic intended) I'm forced to think about my health because I can't really be there for them if I'm not "there" (here?) uknowwutimean

K end rant!

fml and my stupid looks fine on the outside rotting on the inside body


Tissue

oh and f*ck IV therapy(it is annoying, long and makes me swell, have to pee alot and bother the nurses to unhook me to go piss) but at least I'm not on dialysis--and I hope it doesn't get to that point

I've seen fistula's I don't want one :(

Hugs
Quote this message in a reply
Vlad
Registered User
User ID: 91454
09-22-2012 05:31 AM

Posts: 31,386



Post: #10
RE: OVER 9000!!!
I´m a huge Fan of English even if Love 2 mispell it Lmao
But this is very ok if Honest?

i will not rub it in about the word Honestchuckle

I will spam ItailanoHeartflowers

http://www.youtube.com/watch?v=9Bbd2a3UT...re=related
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LoP Guest
lop guest
User ID: 122582
09-22-2012 05:31 AM

 



Post: #11
RE: OVER 9000!!!
What vaccines did you receive while you were in the military?

doomed
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Vlad
Registered User
User ID: 91454
09-22-2012 05:32 AM

Posts: 31,386



Post: #12
RE: OVER 9000!!!
If smell umportho you are smellin right Heartflowers
Quote this message in a reply
Vlad
Registered User
User ID: 91454
09-22-2012 05:33 AM

Posts: 31,386



Post: #13
RE: OVER 9000!!!
LoP Guest  Wrote:
What vaccines did you receive while you were in the military?

doomed

Non epileptic ones?
I had numerous?, why ask?
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Aalia
CyBorg
User ID: 117675
09-22-2012 05:33 AM

Posts: 3,078



Post: #14
RE: OVER 9000!!!
LoP Guest  Wrote:
You really need a local support group. Please check with your doctor.
I am afraid that people on LOP will be mean to you and drive you over the edge.

I am very sorry for you.

But please do not seek comfort on the Internet.

Heartflowers

I seek comfort in the arms of my husband

It's not comfort I seek it's answers

and that ONE person who just MAYBE might see this post and say

MY MOM HAD THIS

that's all I need.

But I understand what you're saying and appreciate your sentiment, so thank you. I have pretty thick skin though regarding the interwebs. Strangers know nothing about my day to day life, so their opinions mean nothing because I don't value the opinions of negative anons. I hope that makes sense.

My feeling is isolation, but I have lots of love and support right here at home and from friends and family.

Before I find a local support group however I'll need a diagnosis. The search continues...
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xenoverse
Registered User
User ID: 70891
09-22-2012 05:34 AM

Posts: 9,731



Post: #15
RE: OVER 9000!!!
Aalia  Wrote:
xenoverse  Wrote:
GET A SECOND OPINION.

I've seen so many doctors in the past nearly 2 years, and I've been to John's Hopkins I'm not sure what else I can do other than throw darts on the wall of genetic testing dart board and watch as my insurance refuses to pay for these thousand dollar tests

I had one genetic test done 1700$--insurance didn't over it.

I have teams of doctors spread across a couple states conversing, I've looked into the Cleveland Clinic because of their clinical trials and their research but my point---it's gone beyond just getting a second opinion heh :(

I think you should stop subjecting yourself to the tests.

Who knows maybe the tests are making it worse than it already is.

Think about it, why are these people willing to perform thousands of dollars of test for people who can't even afford it.

The reason is because they benefit from it whether you pay for it or not.

doomed
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