OT?/ ATTN: and/or a

[Guest guest]

Do either of you know anything about or where to find information on

CCLE, tumid lupus,periungual lupus? I have only found limited info.

I am trying to get as much insight with information on these subjects

so I can go square off with a dermatologist to get some skin biopsy's

on my own somehow. I am RF positive and now SSB+. They found the

SSB in bloodwork when I went on my own in another state for a second

opinion in which I can't afford to follow up on just yet as it is

500+ miles away and I am still paying on the tests I had done there.

You may recall me going to Wyoming when my mother up and had end

stage renal failure out of the blue and then it coupled off with

heart valve failure or something like that and the two took her out

in a matter of weeks. My doc here thinks I'm hysterical and deluded

and doesn't know what Sjogren's even is and I have no symptoms other

than possible gland swelling in like my cheek/ear area and rarely, my

eye tests are all normal,etc... I have taken a lot of advice and

information from this site and have kept a journal, etc... to try to

more of less figure out on my own what in the sam hell is going on

with me. I am heading into or currently in a flare. They come and

go in a sequencial however ya spell it order, it is as

follows...Shaky w/ muscle cramps and spasms, periungual involvement

(I don't know if either of you recall me asking about clubbing?) (The

worse the periungual is prior to a flare predicts it's severity) (It

started about the time or shortly after I became and stayed RF+)(not

on all fingers either) nervousness, some sort of vetigo, watery eyes

with semi sore throat - (depending on flare it might be followed by

bronchitis) some relestness but not insomnia, alopecia, plaques on

arms and trunk, (had for years - they look like ringworm and leave

white spots when they disappear)then comes the arthralgia and myalgia

coupled with fever and fatigue, malaise and chills. I usually have

loss of appetite and I have lost 39lbs. since Feb. of this year

(gained a lot over the years with the inactivity) I naturally have

more questions but, I need to take a break! Anyhow, anything you

might know would be oh so helpful!!!!!!!!!!!!!!!! Thanks, Kim

[Guest guest]

SSB is associated with sjogrens and SLE. It's a scary thing that your

doctor doesn't know what sjogrens is. No wonder you went elsewhere.

Keeping a journal of

everything that is going on may help. I just hope you find out what

is going on soon.

Diagnostic associations in a large and consecutively identified

population positive for anti-SSA and/or anti-SSB: the range of

associated diseases differs according to the detailed serotype

http://ard.bmjjournals.com/cgi/content/abstract/61/12/1090

Types of Lupus

http://www.lupus.org/education/types.html

Cutaneous lupus erythematosus - Clinical and laboratory aspects

http://www.anaisdedermatologia.org.br/artigo_en?artigo_id=18

Lupus: A Patient Care Guide for Nurses

and Other Health Professionals

http://www.niams.nih.gov/hi/topics/lupus/lupusguide/chp4.htm

Cutaneous manifestations of systemic lupus erythematosus

http://patients.uptodate.com/topic.asp?file=lupus/2063

a

On Nov 30, 2005, at 12:06 PM, ksamedifference wrote:

> Do either of you know anything about or where to find information on

> CCLE, tumid lupus,periungual lupus? I have only found limited info.

> I am trying to get as much insight with information on these subjects

> so I can go square off with a dermatologist to get some skin biopsy's

> on my own somehow. I am RF positive and now SSB+. They found the

> SSB in bloodwork when I went on my own in another state for a second

> opinion in which I can't afford to follow up on just yet as it is

> 500+ miles away and I am still paying on the tests I had done there.

> You may recall me going to Wyoming when my mother up and had end

> stage renal failure out of the blue and then it coupled off with

> heart valve failure or something like that and the two took her out

> in a matter of weeks. My doc here thinks I'm hysterical and deluded

> and doesn't know what Sjogren's even is and I have no symptoms other

> than possible gland swelling in like my cheek/ear area and rarely, my

> eye tests are all normal,etc... I have taken a lot of advice and

> information from this site and have kept a journal, etc... to try to

> more of less figure out on my own what in the sam hell is going on

> with me. I am heading into or currently in a flare. They come and

> go in a sequencial however ya spell it order, it is as

> follows...Shaky w/ muscle cramps and spasms, periungual involvement

> (I don't know if either of you recall me asking about clubbing?) (The

> worse the periungual is prior to a flare predicts it's severity) (It

> started about the time or shortly after I became and stayed RF+)(not

> on all fingers either) nervousness, some sort of vetigo, watery eyes

> with semi sore throat - (depending on flare it might be followed by

> bronchitis) some relestness but not insomnia, alopecia, plaques on

> arms and trunk, (had for years - they look like ringworm and leave

> white spots when they disappear)then comes the arthralgia and myalgia

> coupled with fever and fatigue, malaise and chills. I usually have

> loss of appetite and I have lost 39lbs. since Feb. of this year

> (gained a lot over the years with the inactivity) I naturally have

> more questions but, I need to take a break! Anyhow, anything you

> might know would be oh so helpful!!!!!!!!!!!!!!!! Thanks, Kim

>

>

>

>

>

>