Help needed Recently diagnosed Chronic Discoid Lupus Erythematodes waiting blood test results SLE)

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niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/2/2012 1:57 AM (GMT -6)   
Hello all,
since last week i know i got CDLE.(Chronic Discoid Lupus Erythematodes)

And they way i find out i got CDLE .

was i went to the doctor,

for a swollen (lymph gland) behind my left ear.

First he looked and said it good be a infEction,

iff it would get worse i should come back.

After a week still not gonne,

I didnt go till my wife said,hey you got a red circle at the same spot.

I went to the doctor,and he looked he said, i send you to the derma,

Went to the derma and first she said do you hike..

I said yes with my dog and family,

Then she said here you got a tick medicine(lymedisease)

start taking them.

Had to give blood .

and after a week i got the news no lymedisease.

She made a new apointment with me to look at it again.

Then Two days before i had to come back to the derma,

I got a rash on my left side of the face. this i have the last two years now same spot never did anything with it,

But the day i had the apointment with the derma about my left ear,

She looked behind my left ear to see the swallow part and the rednness was less then before... she told me that tick medicine can work for more infections,She said iff you get it worse again just phone me.

Then i said to her,Could you look at my left face now,i yust got it back and this i have over the last two years now it comes and gos.

She looked at it and said there we take a biopsie from,

I think its granuloma anullera she said to me.

After two weeks i got a phone call.

And she told me they found something,

but it was not what they expected.

Then she told me i got lupus CDLE.

Now i know i got lupus,

I am thinking off my other problems they sometimes occur suddenly.

The first problem i have over years now every day.


I Always sweat a lot at night.

My wife notice it every time,

I notice it when i have to go toilet a night and come back in bed,and its cold and wet.

I have days that i wake up,and i can take my hand and sweep a lot off sweat off every were, i feel hot inside,

and the sweat gos off and is back in minutes.

Also grind my teeth some days i dont some days i do a lot,
And when i wake up it,feels locked sometimes and it feels off one teeth give pressure to another teeth in wrong position.

I get chills suddenly,
Trembling feeling dont know what causes it,
Because it just happens and its not even to cold ore hot at that point.

Also a feeling off drunkness suddenly occur,
Like its hard for me to stand straight,
atleast it feels i am out off balance,
This can last for a week ore so.


iff i have backpain then i got it pretty bad,

Like standing against the wall otherwise it hurts like hell, (31 years)

most of the times in the underback and sometimes in the middle.



My muscles in my fingers, hand ore wrist.

Suddenly kramps ore whatever ,and it kinda locks it in a strange angle,

open hand and suddenly one fingers locks itself and go near the hand,

I have to try hard to get it out without helping with my other hand,

Iff i reach the point its loose but when it comes close to the point it locks itself again,

The same thing happens sometimes to my wrist/hand

Also sometimes when i take a big breath i feel a pain in the middle of the chest, this stays a while and then its gonne,

I have had this not many times but think like 4 /5 times the last year

Not saying that this had something to do with lupus.

But Could it be?


Half year ago i had for two weeks the feeling my head was shaking/shakey)
Never said anything to the wife cus i thougt i was crazy.
But a few days ago i read some people with lupus had this,


Some people familiar with these kind off problems?

Greetings A friend

Post Edited (niceguy31) : 4/4/2012 2:20:11 AM (GMT-6)


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 4/2/2012 10:05 AM (GMT -6)   
What is CDLE? Also, have you had your potassium checked? Sounds like a lot of the issue with your hands cramping and going in odd directions.
Amy
Lupus Moderater


dialysis from lupus nephritis

niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/2/2012 12:30 PM (GMT -6)   
Hello Aimsgirl,
Thnx for replying.

To answer youre question,

What does CDLE stand for?
Chronic Discoid Lupus Erythematodes

Didnt check anything yet,
I had skin biopsie and after one week i got result CDLE
After that they take blood and urine,(Checking for SLE)
And 1 week passed, still have to wait 2 weeks for results.

Any other thing you can related to?


Greetings from the netherlands

Post Edited (niceguy31) : 4/2/2012 11:36:30 AM (GMT-6)


niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/4/2012 3:21 AM (GMT -6)   
Any other people with lupus can relate to my problems,
Any reply would be appreciated it.
Thnx in advance.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12138
   Posted 4/4/2012 3:42 PM (GMT -6)   
I have sun sensitivity with my SLE. I get rashes and red spots.

Lupus affects everyone differently.
Joy

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/5/2012 9:35 PM (GMT -6)   
Wow.... I felt like you were speaking for me. Sounds so much like the way I feel all the time its scary. In the begininng mine was also diagnosed as discoid Lupus.... more tests reveleaed just how lucky of a girl I was going to be. I could talk forever about it but speaking about JUST the symptoms you have described are exactly how I feel every day. The sweating... the swelling in your hands... like joint pain etc. Back problems galor.

I hope you are not diagnosed with systemic lupus. Wish you well.

Steph

niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/6/2012 5:54 AM (GMT -6)   
Hey all thnx for the replys,

Its nice to talk to people,that also are in the same boat.

Kookla You tell me they first diagnosed you for CDLE,
So you got another diagnose now? Sle>?

Iff so sry to hear.


10 april i will get a phone call,
Hope it will be a good one.

Greetings to all A friend

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 4/6/2012 4:53 PM (GMT -6)   
Nice Guy31,

Yes I was first diagnosed with Discoid Lupus. I had just finished a marathon and broke out with a major butterfly looking rash. I was sent to a dermatologist. He first gave me antibiotics and said I had a staph infection from the hot tub at the gym. lol.. but I clearly didn't get better. So I kept going back with more and more symptoms. Hair falling out. Joint pain.all the classic lupus symptoms.. really tired. But this dermatologist kept telling me the same thing. Then he did a urine test and found out I had protien in my urine. There fore I had kidney involvment with the lupus and was told most likely System Lupus. Sent to a rhematologist and was diagnosed with sle finally.

Hope you get good news!
Steph
Steph

Diagnosed SLE since 1995, Lupus anticoagulant, Class 4 Kidney disease, depression, seizures & a stroke.

niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/7/2012 8:33 AM (GMT -6)   
Thnx for the replys and wish you all the best.

lately i have some strange Pain stings in my left buttock,


The last few days,
I feel in my fingers pain stabs,
just sitting at the couch.

niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/10/2012 7:38 AM (GMT -6)   
So today i get a phone call,
From hospital,

They tell me some test were good,
But something went wrong,
And they dont have the result For A.N.A test and some D.N.A kind off test.
I didnt hear him anymore ,i only heard something went wrong,
And thinking i have to wait again.

Today i went straight away again giving blood.

I talked to the people from the blood lab,
And they couldnt tell me exactly what went wrong,
Maybe it fell ore something,
Now i am home and think,
Iff the drop the bloodtube testing for A.N.A.

that had to be 3 weeks ago when they transport it,why not calling me then??


Ore could it be after 3 weeks when they get it out a room and then drop it????

I dont know i think its strange,
Why they dont put something that went wrong on paper,
so the person knows why it went wrong!

2 weeks then i have a appointment with the hospital, then i get result and will he further investigate my problems.

Any one have had this problem,with test went wrong?

One more thing i looked at the bloodpaper today,
And see testing on A.N.A and 3 other test,
There was also E.N.A Test and anti-dsDNA test on the paper.

now i read two other internet site were it says,

first site
about 95% of those with SLE have a positive ANA test result. If someone also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia, then she probably has SLE. In cases such as these, a positive ANA result can be useful to support SLE diagnosis. Two subset tests for specific types of autoantibodies, such as anti-dsDNA and anti-SM, may be ordered (often as an ENA panel) to help confirm that the condition is SLE.

second site
The anti-dsDNA test is used in support of a diagnosis of systemic lupus erythematosus (SLE) and distinguishes it from other autoimmune disorders. The test is typically ordered following a positive ANA test in people who have clinical signs that suggest SLE. It may be ordered along with another autoantibody associated with SLE, the anti-Sm (Smith antibody) test, which is often performed as part of an extractable nuclear antigen (ENA) panel. Depending upon clinical signs and the doctor's suspicions, additional autoantibodies may be ordered to help distinguish between, and rule out, other autoimmune disorders.



iff the A.N.A test is positive they will do two other test.
ENA TEST AND ANTI-dsDNA TEST.
Why they test it on me ,
they didnt had any result jet on the A.N.A cus something went wrong,
But still testing on the other two?

Post Edited (niceguy31) : 4/10/2012 11:27:35 AM (GMT-6)


niceguy31
New Member


Date Joined Apr 2012
Total Posts : 8
   Posted 4/10/2012 8:11 AM (GMT -6)   
when i have the appointment i gonna tell him my problems,

But one thing is freaking me out,
I always Sweat heavinly at night,
I can get the sweat off any were and it comes back verry fast.
My bed and sheats are wet and cold.

Whats wrong with me i dont even use medicins at the moment.

Like you can read in first message i had a lymphgland swollow behind my left ear,
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