Addressing All the Questions

[Guest guest]

My symptoms were/are:

Sky-high ferritin and SED rate (general markers for inflammation).

Itchy rash on arms and thighs that migrated and morphed in front of

your eyes!

Liver and Spleen swelling.

Arthritis in the wrists, fingers, and knees

Severe full-body muscle pain

Severe sore throat

VERY low white blood cell count... which inexplicably went back to

normal again.

The tests I endured to reach diagnosis are:

Blood tests for: lupus, leukemia, lyme's disease, rheumatoid

arthritis, AIDS, mononucleosis, Epstien Barr, everything under the

sun.....

Scans for tumors: CT scans for brain tumors, gallium scans for body

tumors, breast ultrasound for breast tumors, uterine endoscopy for

uterine tumors, upper G.I. endoscopy for gut tumors (I'm TUMOR FREE!)

OThers: Spinal tap for meningitus (oh, the fun.)

Yes, as someone mentioned, there is no test for Still's Disease. It

is a diagnosis of exclusion, which means the doctors test you for

everything else they can think of to excluse those diseases, and if

you don't have those, you're stuck with the crappy diagnosis of

Still's disease. Bleck!

something interesting: A rheumi I just met told me that even if you

initially test negative for lupus, you may test positive in the

future. Oh, man....

[Guest guest]

, I've heard that as well. Also Lyme disease may show up negative

then show up positive. A reminder that it's really important to track

your symptoms (also scary when you think about how quickly we're doused

with drugs like prednisone that will mask/control symptoms even before

a proper diagnosis).

I've been meaning to write a quick note about a post earlier in the

week about how Diet and Exercise are the " fix " for Still's. I totally

agree that it's important to eat healthy and exercise regularly, for

everyone, but especially for people with an autoimmune disease, but I

wanted to point out that because of the unpredictable flare/remission

nature of Still's, what that poster might have experienced was a

natural remission that she attributed to diet and exercise. I hope she

never gets another flare! But I've also been in a similar position

when I've tried something, felt " cured " and euphoric, only to have the

dragon come back and bite me in the butt again. I exercise religiously

and have given up all sugar and all processed carbs and I try to eat

organic as much as I can afford, so I should be in remission, right?

Instead, I'm jabbing myself with a freaking needle every morning full

of stuff that burns and leaves big red hot itchy welts on my body

hoping that maybe THIS one will work and I can get off the steroids

that are eating my bones and get off the methotrexate that has killed

my plans to have a baby.

Yes, bitter, party of one, your table is ready.

Ah yes... now I remember why I stopped posting to this site--because

all I do is RANT. LOL. My apologies to those who have suffered much

worse.

in Maine

> something interesting: A rheumi I just met told me that even if you

> initially test negative for lupus, you may test positive in the

> future. Oh, man....

>

>

>

[Guest guest]

, I've heard that as well. Also Lyme disease may show up negative

then show up positive. A reminder that it's really important to track

your symptoms (also scary when you think about how quickly we're doused

with drugs like prednisone that will mask/control symptoms even before

a proper diagnosis).

I've been meaning to write a quick note about a post earlier in the

week about how Diet and Exercise are the " fix " for Still's. I totally

agree that it's important to eat healthy and exercise regularly, for

everyone, but especially for people with an autoimmune disease, but I

wanted to point out that because of the unpredictable flare/remission

nature of Still's, what that poster might have experienced was a

natural remission that she attributed to diet and exercise. I hope she

never gets another flare! But I've also been in a similar position

when I've tried something, felt " cured " and euphoric, only to have the

dragon come back and bite me in the butt again. I exercise religiously

and have given up all sugar and all processed carbs and I try to eat

organic as much as I can afford, so I should be in remission, right?

Instead, I'm jabbing myself with a freaking needle every morning full

of stuff that burns and leaves big red hot itchy welts on my body

hoping that maybe THIS one will work and I can get off the steroids

that are eating my bones and get off the methotrexate that has killed

my plans to have a baby.

Yes, bitter, party of one, your table is ready.

Ah yes... now I remember why I stopped posting to this site--because

all I do is RANT. LOL. My apologies to those who have suffered much

worse.

in Maine

> something interesting: A rheumi I just met told me that even if you

> initially test negative for lupus, you may test positive in the

> future. Oh, man....

>

>

>

[Guest guest]

, I've heard that as well. Also Lyme disease may show up negative

then show up positive. A reminder that it's really important to track

your symptoms (also scary when you think about how quickly we're doused

with drugs like prednisone that will mask/control symptoms even before

a proper diagnosis).

I've been meaning to write a quick note about a post earlier in the

week about how Diet and Exercise are the " fix " for Still's. I totally

agree that it's important to eat healthy and exercise regularly, for

everyone, but especially for people with an autoimmune disease, but I

wanted to point out that because of the unpredictable flare/remission

nature of Still's, what that poster might have experienced was a

natural remission that she attributed to diet and exercise. I hope she

never gets another flare! But I've also been in a similar position

when I've tried something, felt " cured " and euphoric, only to have the

dragon come back and bite me in the butt again. I exercise religiously

and have given up all sugar and all processed carbs and I try to eat

organic as much as I can afford, so I should be in remission, right?

Instead, I'm jabbing myself with a freaking needle every morning full

of stuff that burns and leaves big red hot itchy welts on my body

hoping that maybe THIS one will work and I can get off the steroids

that are eating my bones and get off the methotrexate that has killed

my plans to have a baby.

Yes, bitter, party of one, your table is ready.

Ah yes... now I remember why I stopped posting to this site--because

all I do is RANT. LOL. My apologies to those who have suffered much

worse.

in Maine

> something interesting: A rheumi I just met told me that even if you

> initially test negative for lupus, you may test positive in the

> future. Oh, man....

>

>

>