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Old 07-21-2003, 11:40 PM   #1
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Join Date: Jul 2003
Location: hillsboro,IL,USA
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mr_sveck HB User
Question any other males with lupus?

Hello Everyone, I am a 19 year old Male with SLE Lupus I have had active lupus for near 4 years and they diagnosed me a year or two ago - I am posting here to find out if any other young guys my age have lupus (I know there are some but maybe there are some on this board)

I just have wanted to get this off of my chest for a long time so here goes: I have played music (bass and guitar) for 7 years and this really has effected my life very badly - I could be touring the united states and europe right now playing my music but due to lupus I honestly can't even count on keeping a band together - It really angers me -

anyway I'm in a "semi-flare" right now and I was in remission for about a year and a half but the last time (around a month or two ago) and this time I felt like I was having a pericardial effusion "chest pain" and I had a real bad ear ache (most likely unrelated to lupus - but the infection may have caused the flare this time) and the doctors I have just dont know what to think - they seem to think I'm crazy - the last two times the ER doctors (it always seems to happen on weekends when there are no REAL doctors on duty) sent me home and basically told me I was crazy -
and it just got worse because my heart rate nears 120 and higher and I always run high fevers - does this happen to anyone else very much because it really annoys me so much!

Anyway thats my frustration post - so much for a first post eh? I hope to hear from someone - next time I post I probably wont be as frustrated - but this is the first lupus group I have ever joined

Thank you
Ben

 
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Old 08-07-2003, 10:55 PM   #2
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Join Date: May 2003
Location: franklin,pa. usa
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robbie822 HB User
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Ben.I read your message on the board. Like you i am a male with lupus but i'm 55 not 19. i was dia 2 years ago and i know i've had it for a long long time before anyone suspected that it was Lupus. About 25 years ago, i had problems with rashes and my hair falling out. Men just didn't have Lupus...that was a womens' disease...Yeah, Right. well to make a long story short....Just hang in there kid. take your meds to control this gift from hell and hope someday they will come up with something. these message boards have really helped me. i felt alone until i started to read what other people are going through. get on the net and do some research about lupus and don't hold anything back when you talk to your rhummy. if your rhummy is hesitant about answering your questions, find another one who will. I wanted to answer you because i was a lead singer in my younger days(beatles,the box tops the partridge family ect.ect.
any how....Ben....just hang in there Kid..things will pick up...I promise...robbie

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Old 08-10-2003, 12:13 PM   #3
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Join Date: Jul 2003
Location: hillsboro,IL,USA
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mr_sveck HB User
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thanks for the reply -it means a lot to me - anyway i've decided (and talked to both my main doctor and my rhumatologis) to keep trying to play - and i'm building up my body for endurance through swimming - its kind of hard but I cant drop a dream just because my body is bad....


thanks again
ben

 
Old 09-10-2003, 07:52 PM   #4
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Join Date: Sep 2003
Location: NEW YORK
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MIKES MOM HB User
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MY 17 YEAR OLD SON WAS IN A CAR ACCIDENT HE WAS DRIVING HOME FROM WORK AND A VERY ELDERLY MAN TURN DIRECTLY IN FRONT OF HIM. HE HAD SOME TRAUMA TO THE INSIDE OF HIS MOUTH AND GOT STITCHES,AS A PERCAUTION THEY PUT HIM ON 9 DAYS ANTIBIOTICS THEN APROX 10 DAYS LATER HIS VISION BEGAN BOTHERING HIM .HE WAS ALSO TOLD HE HAD STREP THROAT ALMOST 3 WEEKS LATER HE BEGAN GETTING VERY HIGH FEVERS THE RASH THE JOINT PAINS THE ULCERS IN HIS MOUTH AND THEN THE NEWS CAME POSITIVE LUPUS.WE WERE TOLD TRAUMA AND A LOW IMMUNE SYSTEM SUCH AS STREP AND HAVING HAD STITCHES PUT IN HIS MOUTH CAN START THIS DISEASE IN ACTION, WE HAVE BEEN IN AND OUT OF HOSPITALS SINCE. HE NOW IS ON 60MG PREDNISONE BECAUSE OF HIS KIDNEY'S.HE LIKE ALL OF US ARE TOTALLY SHOCKED WITH THIS LUPUS THING.
HAS ANY EVER HEARD OF A HEALTHY YOUNG MAN BEING SO TRAUMATIZED AND STRESSED OUT THAT HE CAN GET SUCH A DEVESTATING ILLNESS LIKE THIS? THE PREDNISONE IS ALSO CAUSING HIM STEROID PHYCHOSIS.HE HASNT SPOKEN TO ANYONE OF HIS FRIENDS SINCE THE DIAGNOSIS .SOMETIMES HE SEEMS VERY LOST.ANTY FEED BACK WOULD BE GREATLY APPRECIATED FROM ANY PERSON WITH THIS HORRIBLE DISEASE.

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TAMI
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TAMI

 
Old 09-23-2003, 12:35 PM   #5
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Join Date: Jul 2003
Posts: 13
Azurite HB User
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Hi Ben,
I'm not a male but wanted to respond on the fevers, they are very very common with lupus. As for the accelerated heart rate, yup that is part of it too and can be controlled to a certain extent..if you come in contact with too many chemicals...could be from the chlorine in your pool if there is chlorine in there...anyhow just wanted to respond to these two things. I have a son who is a guitarist and so gifted too...only his problem isn't Lupus but drugs......anyhow, I wish you the best with your music, I am sure it is wonderful therapy for you as well.

 
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