Re: I'm a newby going crazy!!! Please help and give advice

[Guest guest]

le,

I'm not even going to try to diagnose you, I will leave that up to the

doctors... that should be in their hands... .but I want you to know that you are

in my prayers and that you are not alone.

I am so sorry you are going through all of this.... I pray that God would

bless you by just lifting all of this off you....its not something anyone

should have to deal with. I can tell you to speak up.... make sure you are

heard... make sure your opinion counts... if you feel they could do more... tell

them that. If you feel like you aren't getting answers... let them know.

((((((((((((((le)))))))))))))) take care of yourself.

kerri sue

denyel17 <denyel17@...> wrote:

Hi! My name is le. I've been really sick for the last 6 years

now, I'm 21 and the first time i passed out i was 15. I've been in

and out of the hospital constantly. Brief history: MVP, Postural

orthostatic tachycardia syndrome, Endometriosis, hysterectomy @ 19.

I have migraines, pleuirsy and basically all the symptoms of Lupus

to the T.

I just got of the hospital for a 3 day stay. My whole body is

swollen and in pain. I know for sure that i have fibromyalgia what

i don;t know is if i have the lupus. All the symptoms are there,

but it's not showing in my blood. From my understanding, that's a

normal thing. My PCP doesn;t want to say that i have it even though

he strongly believes that i do. He sd he wants the specialtists to

say so. He knows if he says that i have lupus it will change

everything even my insurance. i'm presently under my mom's

insurance but that will end soon. So the doc said he wants me to see

a rheumy. the one he has referred me to, i saw in the hospital and

she said that i do have lupus. do you think i do or don't? what else

could it be? And basically i'm being treated for it. I am taking

decadron 4mg 2xs per day and oxycontin 80 mg 2xs/day. I also have to

take phenegran.

I cannot stand up for more that a couple minute with swelling and

being thrown into an immense level of pain. My left hand has been

swollen for over a week more than twice the size. I am extremely

fatigued and weak. I can;t even open a soda can. I feel so

useless. It's really starting to take a toll on my emotional and

physically being.

my doc has cld me a phenomenon. What could be going on.? I have

the malar rash on my face. I'm loosing my hair. i get fevers

freqently i don;t know why. the painful, swelling joints, fatigue

everything. what's your opinion? Any advice as to what i should do

now? any suggestions on what i can do about the fibromyalgia? Do

you have any questions for me to help with the picture? i REALLY

NEED SOMEONE TO TALK TO MOSTLY. I'm going stir crazy. I can;t really

get off the couch b/c it hurts so bad. Oh yeah, my legs tingle at

times. like pens and needles xs 1000. My legs have given out on me

a good # of times too. I mean seriously no feeling, i've fallen down

the stairs numerously.

[Guest guest]

Hi le, Sounds like you do have some autoimmune things going on, but it

could be one of many. They will start to find out things with the blood work and

your history. I also had the migraines pleurisy and i had a histerectomy finally

when i was 28.hopefully they will figure things out for you soon. Debbie

__________________________________________________

[Guest guest]

Hi le,

I'm sorry you have suffered so much in your young life. I'm sure that

in time, you wil find more of the answers you are seeking about the

exact nature of your condition. It sounds very difficult to cope with

the way things are right now; you deserve much compassion and I hope

you get it from the people around you. The practice of meditation has

been very helpful to me for the past 25 years--I got started when I

was going through a period of tremendous stress. Perhaps you could

order a CD or book on-line to give it a try? It's very calming.

Sending you wishes for restored health,

Sierra

>

> Hi! My name is le. I've been really sick for the last 6 years

> now, I'm 21 and the first time i passed out i was 15. I've been in

> and out of the hospital constantly. Brief history: MVP, Postural

> orthostatic tachycardia syndrome, Endometriosis, hysterectomy @ 19.

> I have migraines, pleuirsy and basically all the symptoms of Lupus

> to the T.

> I just got of the hospital for a 3 day stay. My whole body is

> swollen and in pain. I know for sure that i have fibromyalgia what

> i don;t know is if i have the lupus. All the symptoms are there,

> but it's not showing in my blood. From my understanding, that's a

> normal thing. My PCP doesn;t want to say that i have it even

though

> he strongly believes that i do. He sd he wants the specialtists to

> say so. He knows if he says that i have lupus it will change

> everything even my insurance. i'm presently under my mom's

> insurance but that will end soon. So the doc said he wants me to

see

> a rheumy. the one he has referred me to, i saw in the hospital and

> she said that i do have lupus. do you think i do or don't? what

else

> could it be? And basically i'm being treated for it. I am taking

> decadron 4mg 2xs per day and oxycontin 80 mg 2xs/day. I also have

to

> take phenegran.

> I cannot stand up for more that a couple minute with swelling and

> being thrown into an immense level of pain. My left hand has been

> swollen for over a week more than twice the size. I am extremely

> fatigued and weak. I can;t even open a soda can. I feel so

> useless. It's really starting to take a toll on my emotional and

> physically being.

> my doc has cld me a phenomenon. What could be going on.? I have

> the malar rash on my face. I'm loosing my hair. i get fevers

> freqently i don;t know why. the painful, swelling joints, fatigue

> everything. what's your opinion? Any advice as to what i should do

> now? any suggestions on what i can do about the fibromyalgia? Do

> you have any questions for me to help with the picture? i REALLY

> NEED SOMEONE TO TALK TO MOSTLY. I'm going stir crazy. I can;t

really

> get off the couch b/c it hurts so bad. Oh yeah, my legs tingle at

> times. like pens and needles xs 1000. My legs have given out on me

> a good # of times too. I mean seriously no feeling, i've fallen

down

> the stairs numerously.

>

[Guest guest]

Thank you so much. I try meditating too. I'm was in school for

massage. I had to take off the last 3 months b/c i'm so sick, but i

do agree that medidation and holistic healing is the best place.

>

> Hi le,

> I'm sorry you have suffered so much in your young life. I'm sure

that

> in time, you wil find more of the answers you are seeking about

the

> exact nature of your condition. It sounds very difficult to cope

with

> the way things are right now; you deserve much compassion and I

hope

> you get it from the people around you. The practice of meditation

has

> been very helpful to me for the past 25 years--I got started when

I

> was going through a period of tremendous stress. Perhaps you could

> order a CD or book on-line to give it a try? It's very calming.

>

> Sending you wishes for restored health,

>

> Sierra

>

>

> --- In , " denyel17 " <denyel17@y...>

wrote:

> >

> > Hi! My name is le. I've been really sick for the last 6

years

> > now, I'm 21 and the first time i passed out i was 15. I've been

in

> > and out of the hospital constantly. Brief history: MVP, Postural

> > orthostatic tachycardia syndrome, Endometriosis, hysterectomy @

19.

> > I have migraines, pleuirsy and basically all the symptoms of

Lupus

> > to the T.

> > I just got of the hospital for a 3 day stay. My whole body is

> > swollen and in pain. I know for sure that i have fibromyalgia

what

> > i don;t know is if i have the lupus. All the symptoms are

there,

> > but it's not showing in my blood. From my understanding, that's

a

> > normal thing. My PCP doesn;t want to say that i have it even

> though

> > he strongly believes that i do. He sd he wants the specialtists

to

> > say so. He knows if he says that i have lupus it will change

> > everything even my insurance. i'm presently under my mom's

> > insurance but that will end soon. So the doc said he wants me to

> see

> > a rheumy. the one he has referred me to, i saw in the hospital

and

> > she said that i do have lupus. do you think i do or don't? what

> else

> > could it be? And basically i'm being treated for it. I am

taking

> > decadron 4mg 2xs per day and oxycontin 80 mg 2xs/day. I also

have

> to

> > take phenegran.

> > I cannot stand up for more that a couple minute with swelling

and

> > being thrown into an immense level of pain. My left hand has

been

> > swollen for over a week more than twice the size. I am

extremely

> > fatigued and weak. I can;t even open a soda can. I feel so

> > useless. It's really starting to take a toll on my emotional

and

> > physically being.

> > my doc has cld me a phenomenon. What could be going on.? I

have

> > the malar rash on my face. I'm loosing my hair. i get fevers

> > freqently i don;t know why. the painful, swelling joints,

fatigue

> > everything. what's your opinion? Any advice as to what i should

do

> > now? any suggestions on what i can do about the fibromyalgia?

Do

> > you have any questions for me to help with the picture? i REALLY

> > NEED SOMEONE TO TALK TO MOSTLY. I'm going stir crazy. I can;t

> really

> > get off the couch b/c it hurts so bad. Oh yeah, my legs tingle

at

> > times. like pens and needles xs 1000. My legs have given out on

me

> > a good # of times too. I mean seriously no feeling, i've fallen

> down

> > the stairs numerously.

> >

>

[Guest guest]

Thanks. I hope that they do figure it out soon too.

>

> Hi le, Sounds like you do have some autoimmune things going

on, but it could be one of many. They will start to find out things

with the blood work and your history. I also had the migraines

pleurisy and i had a histerectomy finally when i was 28.hopefully they

will figure things out for you soon. Debbie

>

> __________________________________________________

>

[Guest guest]

Thank you so much. I know that this is all a trial that God has set

in front of me for an awesome testimony. Thank you for all your

prayers they really mean a lot. I will have you in my prayers as

well.

> Hi! My name is le. I've been really sick for the last 6

years

> now, I'm 21 and the first time i passed out i was 15. I've been in

> and out of the hospital constantly. Brief history: MVP, Postural

> orthostatic tachycardia syndrome, Endometriosis, hysterectomy @

19.

> I have migraines, pleuirsy and basically all the symptoms of Lupus

> to the T.

> I just got of the hospital for a 3 day stay. My whole body is

> swollen and in pain. I know for sure that i have fibromyalgia

what

> i don;t know is if i have the lupus. All the symptoms are there,

> but it's not showing in my blood. From my understanding, that's a

> normal thing. My PCP doesn;t want to say that i have it even

though

> he strongly believes that i do. He sd he wants the specialtists

to

> say so. He knows if he says that i have lupus it will change

> everything even my insurance. i'm presently under my mom's

> insurance but that will end soon. So the doc said he wants me to

see

> a rheumy. the one he has referred me to, i saw in the hospital

and

> she said that i do have lupus. do you think i do or don't? what

else

> could it be? And basically i'm being treated for it. I am taking

> decadron 4mg 2xs per day and oxycontin 80 mg 2xs/day. I also have

to

> take phenegran.

> I cannot stand up for more that a couple minute with swelling and

> being thrown into an immense level of pain. My left hand has been

> swollen for over a week more than twice the size. I am extremely

> fatigued and weak. I can;t even open a soda can. I feel so

> useless. It's really starting to take a toll on my emotional and

> physically being.

> my doc has cld me a phenomenon. What could be going on.? I

have

> the malar rash on my face. I'm loosing my hair. i get fevers

> freqently i don;t know why. the painful, swelling joints, fatigue

> everything. what's your opinion? Any advice as to what i should do

> now? any suggestions on what i can do about the fibromyalgia? Do

> you have any questions for me to help with the picture? i REALLY

> NEED SOMEONE TO TALK TO MOSTLY. I'm going stir crazy. I can;t

really

> get off the couch b/c it hurts so bad. Oh yeah, my legs tingle at

> times. like pens and needles xs 1000. My legs have given out on

me

> a good # of times too. I mean seriously no feeling, i've fallen

down

> the stairs numerously.

>

>

>

>

>

>

>

>

[Guest guest]

I So second what Kerri says. It's often soooo hard to

get definitive answers in this disease specialty know

as Rheumatology. What I do know is that often, people

will test negative for quite some time after their

symptoms start. I was in pain and deteriorating

function for 7 years before one doctor got smart

enough to say Hey...there's more here and finally sent

me to a rheumy who diagnosed me with RA even though my

RF is negative. He said my blood may never convert to

positive but there's about 10% of those affected who

never test positive. My advice to you is consistent

with Kerri's and also to say that I would go with the

Rheumy's recommendations because at least he will

treat you as if you are positive and then you'll know

if you improve at all. It's better than not being

believed at all and being left to further deteriorate.

Lupus is serious stuff. Don't just sit back and take

it. Also....it sounds like you're a Christian. You

may well be right that you are being set up to be an

excellent testimony for Him. God never promised that

we would all live " well " lives after Adam and Eve.

but, HE did promise that we would never go through it

alone, he's there with us and " All things work

together for the good " . He's there with you and even

carrying you through this if you will allow him.

Take Care,

Trish

--- denyel17 <denyel17@...> wrote:

> Thank you so much. I know that this is all a trial

> that God has set

> in front of me for an awesome testimony. Thank you

> for all your

> prayers they really mean a lot. I will have you in

> my prayers as

> well.

>

>

> > Hi! My name is le. I've been really sick

> for the last 6

> years

> > now, I'm 21 and the first time i passed out i was

> 15. I've been in

> > and out of the hospital constantly. Brief history:

> MVP, Postural

> > orthostatic tachycardia syndrome, Endometriosis,

> hysterectomy @

> 19.

> > I have migraines, pleuirsy and basically all the

> symptoms of Lupus

> > to the T.

> > I just got of the hospital for a 3 day stay. My

> whole body is

> > swollen and in pain. I know for sure that i have

> fibromyalgia

> what

> > i don;t know is if i have the lupus. All the

> symptoms are there,

> > but it's not showing in my blood. From my

> understanding, that's a

> > normal thing. My PCP doesn;t want to say that i

> have it even

> though

> > he strongly believes that i do. He sd he wants

> the specialtists

> to

> > say so. He knows if he says that i have lupus it

> will change

> > everything even my insurance. i'm presently under

> my mom's

> > insurance but that will end soon. So the doc said

> he wants me to

> see

> > a rheumy. the one he has referred me to, i saw in

> the hospital

> and

> > she said that i do have lupus. do you think i do

> or don't? what

> else

> > could it be? And basically i'm being treated for

> it. I am taking

> > decadron 4mg 2xs per day and oxycontin 80 mg

> 2xs/day. I also have

> to

> > take phenegran.

> > I cannot stand up for more that a couple minute

> with swelling and

> > being thrown into an immense level of pain. My

> left hand has been

> > swollen for over a week more than twice the size.

> I am extremely

> > fatigued and weak. I can;t even open a soda can.

> I feel so

> > useless. It's really starting to take a toll on

> my emotional and

> > physically being.

> > my doc has cld me a phenomenon. What could be

> going on.? I

> have

> > the malar rash on my face. I'm loosing my hair. i

> get fevers

> > freqently i don;t know why. the painful, swelling

> joints, fatigue

> > everything. what's your opinion? Any advice as to

> what i should do

> > now? any suggestions on what i can do about the

> fibromyalgia? Do

> > you have any questions for me to help with the

> picture? i REALLY

> > NEED SOMEONE TO TALK TO MOSTLY. I'm going stir

> crazy. I can;t

> really

> > get off the couch b/c it hurts so bad. Oh yeah,

> my legs tingle at

> > times. like pens and needles xs 1000. My legs

> have given out on

> me

> > a good # of times too. I mean seriously no

> feeling, i've fallen

> down

> > the stairs numerously.

> >

> >

> >

> >

> >

> >

> >

> >