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View Full Version : HELLO @ EVERYONE!! I'M NEW HERE WITH SLE (??)



MOON
11-06-2003, 10:20 AM
HELLO.. could you pls tell me if this sounds like SLE?



> I've problems with joint pain(knee and fingers and
other joints but not so painfull) :( :( :( ....

>i have ANA 1:320 and sedimentation of the blood
is a bit high.

> I feel a bit sick, because of a headdache
and i feel i would have a little temperature which i don't have actually.


my SLE checklist: :?: :?:

Typical Symptoms of Lupus:

Unexplained fever
---- No
Extreme fatigue
---- after sleep of 5-6hours and lots of stress
i yawn a lot, but i don't feel tired :shock:
is that extreme fatigue?
Painful or swollen joints
---painful sometimes,but never swollen!
knee seldom, fingers sometimes

Red rash or color change on the face
---yes looks like a butterfly,
but no way it looks sunburned.
i saw it in many faces, they can't all
have SLE

Chest pain upon deep breathing
----no

Unusual hair loss
--- yes

Pale or purple fingers or toes from cold or stress
(Raynaud's phenomenon)
--- yes,sometimes fingers and feet get
cold, but never red or blue...

Sensitivity to the sun
--- hmm, not really

Swelling (edema) in legs or around eyes
---- no

Swollen glands

-- can't descide that by my own,
but last time doc said no


MY QUESTIONS: :!:

> I've read a lot about SLE and
> found very bad things mainly...

> how can u distinguish a mild case from a
> bad case???

> And i actually never read anywhere that if
> you get SLE with e.g. 12 years....
> that you have got the chance to get 80 years old.


> I've read about 5,10 and the highest was 20-25 years
> you are able to survive.

> You in the USA have much more people with SLE
> what do u think?


> And if i'm diagnosted, do i need at once
> a basic therapy???

> Can a basis therapy prevent an inclusion
> of the organs??????????????????????????????
?????????????????????????????????????????????
??????????????????????????????????????


> PLEASE ANSWER MY QUESTIONS
> Thanks in Advance

Saysusie
11-07-2003, 12:23 AM
Well Moon - welcome to our forum. I wish that I were able to give you definate answers to your questions. However, there are two main reasons why I don't think that I can:
1) Lupus is such an unpredictable disease and it affects each of us differently. You need not have all eleven indicators to be diagnosed with LUPUS. You only need four of the eleven. You seem to have at least four. But, there are a series of tests which must be run before any doctor will make a positive diagnosis. Your High ANA and sediment can also be attributed to other immune diseases. Distinguishing Pre-Lupus from SLE (or any of its other symptoms) depends upon the results of your battery of tests. Only a doctor (perferrably a rheumatologist) can make that distinction. Which leads me to my second reason :(
2) I am not a doctor and all of the information that I place on this site is the result of research. I can only give you information about symptoms, medications, etc. But, I cannot tell you if you do, in fact, have SLE.
The life expectancy of LUPUS is increasing with the advancement of treatments and therapies. I was diagnosed in 1984, I went into remission in 1991 and have remained in remission since then! That is nearly 20 years and I am nowhere near death!!
I know that much of the literature that you read is depressing and malignant....but try not to cause yourself undue stress before you are even diagnosed. Most doctors will start you on treatment prior to a final diagnosis. Discuss this possibilty with your doctor at your next appointment.
Remember . you are not alone! :)
Stay in touch and, even though we are not doctors here, we want to support you and to offer you comfort!
Saysusie

MOON
11-07-2003, 03:50 AM
Thank you for ur answer

MOON
11-07-2003, 03:52 AM
is it rare that people go into a remission?
or has everyone got the chance with a good
therapy and treatment? :?:

MOON
11-07-2003, 03:54 AM
how serious is ur SLE?
do u have organs involved?

does a remission mean that u have no pain at all
and u feel like u are healthy?

MOON
11-07-2003, 04:02 PM
are u into a remission with medicaments or
are u in remission without anything u take?

MOON
11-08-2003, 07:10 AM
pls answer

Saysusie
11-11-2003, 12:14 PM
Hello Moon; :lol:
No, it is not rare that people go into remission. With the new treatments and knowledge about Lupus, a large # of patients go into remission.
My SLE was caught in a very, very early stage and treatment began immediately (by early, I mean it took a year for tests and diagnosis. That's relatively quick for LUPUS diagnosis). Therefore, I did not have any organ involvement.
My daughter's symptoms began COMPLETELY different from mine and we did not recognize them. She was misdiagnosed and by the time a positive LUPUS diagnosis was made, she had severe organ involvement. She died in 1999 from heart failure due to pulmonary hypertension, pericarditis, and a liteny of other symptoms that she suffered.
My Rheumatologist explained that, "Remission does not mean that you are free of the disease, but that you can now control it without medication!". Therefore, I still have minor flares, still suffer from fatigue, still have FM, still have sun sensitivity, still have muscle aches, I still suffer from depression/anxiety, I am still susceptable to infections.....I am just not on medication for anything except the FM, IBS, and Depression.
I am very careful about how I eat, how I treat my body, not over exerting myself and I exercise every day (no matter how tired I am or how much it hurts!!) For me, that has been one of the main reasons why I have remained in remission for so long; That and the fact that I am retired and no longer have the stress of the workplace!!
I hope that I have answered you questions :lol:
Peace and Blessings
Saysusie
I have been like this for over 10 yrs!

MOON
11-12-2003, 02:11 AM
yes, thank you!!!

tell me one thing....

can treatement and medicaments prevent organ
involvement or don't they prevent it.

THAT WOULD BE IMPORTANT FOR ME TO KNOW :oops:

Doc's over here don't seem to have much knowledge :shock:

MOON
11-12-2003, 02:45 AM
yes, thank you!!!

tell me one thing....

can treatement and medicaments prevent organ
involvement or don't they prevent it.

THAT WOULD BE IMPORTANT FOR ME TO KNOW :oops:

Doc's over here don't seem to have much knowledge :shock:

or have u been lucky, not to get any since 1985 ?

Saysusie
11-12-2003, 03:16 AM
Moon;
I think that organ involvement depends largely upon the type of LUPUS that you have AND the type of treatments that you receive. My lack of organ involvement was due, in part, to the fact that I showed signs and symptoms of Discoidal Lupus at first. However, because of my ANA, protein in urine, high titer, etc., my doctor started me on SLE treatment. I was also lucky in the fact that my doctor had just returned from Switzerland, 3 weeks before I went to him with symptoms, where he had attended a 2 week seminar on LUPUS. He recognized my symptoms immediately.
Even so, my positive diagnosis took almost a year. Don't get me wrong..I was still a VERY,VERY sick lady: I lost all of my hair, I could barely walk, I had migraines almost every day, Every muscle and joint in my body hurt, I had lesions on my face, hands and feet, I had ulcers in my mouth and I was hospitalized many times!
If you listen to your body, talk to your doctor and DO NOT LET ANYONE TELL YOU THAT IT IS ALL IN YOUR HEAD, insist upon tests and treatments, you may be successful in avoiding organ involvement! However, there is no sure way of knowing if you will or will not have organ involvement. That is one of the reasons why this disease is so unpredictable!!
Learn as much as you can about the disease - Learn to listen to and know your body - be aggresive with your doctors!
8)
Saysusie