Re: 23 yr. old female with mixed connective tissue disorder

[Guest guest]

Hi ,

I'm Shaney. I have arthritis and APLAS which is a sister disease to Lupus.

I've been tested many times and sometimes they show on the tests and sometimes

they don't. Know that you're not alone...

<steph_babyangel@...> wrote:

one minute they say i have lupus the next they say i have arthritis.

symptoms are swelling in the joints and immune system problems. just

want someone like me to talk to about it. any help is thankful.

thanks,

stephanie

---------------------------------

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[Guest guest]

HI STEPHANIE! WHAT KIND OF DR IS TELLING U THIS?LUPUS IS A VERY SERIOUS ILLNESS &

RA IS SCARY TOOOO. I HAVE HAD RA SINCE I WAS 5YRS OLD & YES I HAVE HAD MY UPS

& DOWNS BUT IM STILL KICKING IT. U HAVE TO STEPH BECUZ THE PAIN CAN TOTALLY GET

THE BEST OF U. IM ALWAYS AVAILABLE TO CHAT,SO IF IM NOT ON LINE LEAVE ME A MESS.

& ILL WRITE U BACK..MELYNDAmapgamez@... GOD BLESS YOU

<steph_babyangel@...> wrote: one minute they say i have

lupus the next they say i have arthritis.

symptoms are swelling in the joints and immune system problems. just

want someone like me to talk to about it. any help is thankful.

thanks,

stephanie

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

...I went through a long time when I was told I had lupus, then mixed

connective tissue disease, then lupus, the something else. Sometimes symptoms

overlap and lab work is not definitive. An accurate diagnosis may take more time

and 'detective work'. Have you seen any other rheumys for a second opinion?

That might help.

Cheryle

[Guest guest]

Hey ,

My name is also and I am 25 years old and

know exactly how you are feeling. I've especially had

a hard time lately because everything has normally

been under control until a few months ago when I went

into a huge flare up and haven't quite gotten back to

normal since. And being so young there are lots of

things I would like to do but sometimes I just can't.

If you ever want to talk feel free to e-mail me at

ssequino@....

--- <steph_babyangel@...> wrote:

> one minute they say i have lupus the next they say i

> have arthritis.

> symptoms are swelling in the joints and immune

> system problems. just

> want someone like me to talk to about it. any help

> is thankful.

>

> thanks,

> stephanie

>

>

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[Guest guest]

Dear ,

Hi, I am very sorry for your diagnosis. I too have what they call mixed

connective tissue disorder, and it is not fun. I try not to take any more

medication than absolutely possible. The Dr. and I have a good understanding.

BUT

there are 2 meds that really help, Neurontin and Cymbalta. It takes some

time to take affect and not feel sleepy, but after that it is so much better.

I cannot guarantee it will work for you, but it does work for me and allows

me to enjoy life.

Hope this helps,

Carol M. in CA

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

i have seen 3 doctors since becoming sick in 98. somedays it does get

the best of me and i just cry because i'm in so much pain. i havent had

a flair up in 6 months. i have gotten a job bc i felt better and the

pain was hurting me anymore.i do draw disability bc their calling my

diagnosis mixed connective tissue disorder which helps. hope to hear

from ya'll soon.

many prayers,

L.

[Guest guest]

thanks for the info i'll see what my arthuritis doctor says about those 2

medicines. keep in touch

Re: [ ] Re: 23 yr. old female with mixed connective tissue

disorder

Dear ,

Hi, I am very sorry for your diagnosis. I too have what they call mixed

connective tissue disorder, and it is not fun. I try not to take any more

medication than absolutely possible. The Dr. and I have a good understanding.

BUT

there are 2 meds that really help, Neurontin and Cymbalta. It takes some

time to take affect and not feel sleepy, but after that it is so much better.

I cannot guarantee it will work for you, but it does work for me and allows

me to enjoy life.

Hope this helps,

Carol M. in CA

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

[Guest guest]

Stepanie,

I too am on Neurotin and it's great. When the DR put me on it my whole life

changed for the better. I take mine at bedtime mainly. I wake up without

feeling drugged and hazy. Occasionally I take it during the day when I have a

flare up, and as Carol mentioned, it takes time to get used to the sleepiness if

you take it in the daytime. Definitely ask your doctor about.

Shaney

stephanie Lumley <steph_babyangel@...> wrote:

thanks for the info i'll see what my arthuritis doctor says about

those 2 medicines. keep in touch

Re: [ ] Re: 23 yr. old female with mixed connective tissue

disorder

Dear ,

Hi, I am very sorry for your diagnosis. I too have what they call mixed

connective tissue disorder, and it is not fun. I try not to take any more

medication than absolutely possible. The Dr. and I have a good understanding.

BUT

there are 2 meds that really help, Neurontin and Cymbalta. It takes some

time to take affect and not feel sleepy, but after that it is so much better.

I cannot guarantee it will work for you, but it does work for me and allows

me to enjoy life.

Hope this helps,

Carol M. in CA

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

[Guest guest]

Thank you all for your encouragement. Sorry, weak

moment in the mid a.m.

Check me out!

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[Guest guest]

Hi !

I know its really frustrating when you are diagnosed

with something, being treated for it, then later

diagnosed with something new or something in addition

to what you already have. I was diagnosed at 19 with

CFS. I became really ill at the age of 28 and it took

two years for them to diagnose me. I had been exposed

and tested positive for toxic molds and stachybotrys

from my work environment. I was being sent to

infectious disease specialists, neurologists, bounced

all over the place. I had lost feeling on one side of

my body, was bedbound for about 2 years..had intense

pain, had no strength. They did spinal taps and

tested for cancers, MS, and finally sent me to a

university hospital where i was diagnosed with FMS and

MPS. Then I began exhibiting signs of lupus which I

know you can also have with FMS. Yet all the tests

were negative including a DNA test they do. The

doctor would continue to check every few months since

the symptoms were still there. Then I began to have

systematic pain and problems with knees to the point

where I couldn't stand and could barely walk. They

thought it was just bilateral patella femoral syndrome

which I do have, but after seeing a sports med

specialist and an osteo dr they concurred it was

inflammatory and tests showed joint effusions. So

after dealing with that for 2 years, they began

treatment with Plaquenil. I've been on that going on

my second year now, and we have added Sulfasalazine

and the diagnosis is inflammatory arthritis early

stage RA. Its so frustrating, yet I know sometimes a

disease can come on slowly, or take time to show more

symptoms so they can diagnose. I hope that you are

feeling better soon! You will get so much support from

this group and learn alot!

STephanie in MIchigan

--- <steph_babyangel@...> wrote:

> one minute they say i have lupus the next they say i

> have arthritis.

> symptoms are swelling in the joints and immune

> system problems. just

> want someone like me to talk to about it. any help

> is thankful.

>

> thanks,

> stephanie

>

>

________________________________________________________________________________\

____

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Find them fast with Search.

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