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Reply | Forward Message #33 of 33 | Next >
Re: [menwithlupus] Hello

Dale,
 
Welcome, sorry the doctor's have not come up with a diagnosis yet.  My trek with Lupus started with a rash and kept progressing.  Now for the most part it is kept in check with slight modifications to my lifestyle and different medications.
 
One of the common things among lupus patients is the amount of time it took to get a diagnosis and the frustration to get there.  It took me 6 years 4 GP's 2 Dermatologists and quite alot of visits to the emergency room before one rooky dermatologist heard my story about the rash etc. and asked me have you been tested for Lupus.  One of the difficulties with a Lupus diagnosis is there is no clear cut test for it and the disease likes to mimic alot of other diseases.  The best advice I can give you on this is to make sure you know where all of your medical files are (at some point you could end up with a rheumy and they will want your medical files to do baselines) and you tell each and every doctor the list of symptoms you have even if the symptom has nothing to do with their specialty.
 
One thing I would have done before the diagnosis would have been to get more life insurance for my family.   Now it is almost impossible to get.
 
Hope this is helpful and I pray you do not have Lupus or any other auto immune disease for that matter and that the doctors are able to diagnose you soon and it is curable.
 
If you need more information feel free to post on the board, it might take us all some time to get to it but we will.
 
-James

Dale <soarhawk2003@...> wrote:
I have not been diagnosed with lupus by a doctor yet. I never even
thought about it till recently i met some biological family(my mom
was adopted at a young age). And I found out an uncle has been
diagnosed with lupus and his symptoms are very much like my own.

I geuss i can start by most lof my life things seemed normal except
for unexplained fevers. Until I was about 28 im now 36. I started
having few problems with fatige and joint pains. Especialy my hands
when i first woke up in morning my hands would be swollen and red
could hardly move my fingers but after i was up for a while it would
go away. Around this time i also broke out with a rash on my backside
at first it was about the size of my wallet. Redish rash puffy
especialy around edges of red area and scaly. thease problems were
never persistant but would come and go. Each time it comes back its
worse than before. now the rash when gets enflamed gos from the
middle of my back to my knees.

In the winter time i seem to have less problems with the rash it will
just about go away except the skin is is slightly discolored and
somewhat flaky. As soon as the weather warms up its comes back full
force and spreads a little more. I do have a rash in my head that
comes and gos in my hair.

I also have problems my arms and hands hurting and sholders. I have
chest pains and pains in my guts.
Things got realy bad about a year ago. I came down with pancreantidus
spent a week in the hospital and just seem like afteri came things
have been so much worse. They arent sure what caused the pancrantidus
they have run a scope through my guts and not seen a problem they
have done ultrasounds on my gaulbladder and liver not seen anything
to cause the pain i suffer. They have done nerve damage tests on my
arms nothing wrong there. The more i go to the doctor the more
frustrated i get one more test and one more time i get that look from
the doctor that makes me feel like im crazy and its just all in my
head somehow. also being tired all the time i did a sleep study that
shows i may have sleep abnia

There are days my arms hurt so bad i would just as soon cut them off
than to have the pain.

I never thought there was a connection between the rash and other
problems i have been having un till i met my uncle who has lupus and
he sufers similar things. His rash breaks out on his back and arms

I was just wondering if my symptons are compariable to with others
that have lupus before i go back to my doctor and have to get that
look again.



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Sat Dec 22, 2007 3:40 am

tigerjlt
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Message #33 of 33 | Next >
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I'm Alan, age 57 and have had Lupus since 1974, with involvement of the kidneys and possibly lupus cerebritus (-5 for spelling). I've undergone biopsies, bone...
lupusman_2001
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Jul 19, 2005
2:19 am

weeks in the hospital and the coma....were those at a later age or earlier? what happens during a minor flare? your in remission with just 5mg of pred a day? ...
Mike Whitmore
nsemikew
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Jul 19, 2005
3:53 pm

Hi! My name's Robert and I was diagnosed with SLE with kidney involvement 3 years ago, although the poly-articular (multi-jointed) arthritis attacks have been...
flash_sphere
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Aug 11, 2006
4:27 pm

I have not been diagnosed with lupus by a doctor yet. I never even thought about it till recently i met some biological family(my mom was adopted at a young...
Dale
soarhawk2003
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Dec 20, 2007
7:09 am

We-ell... as far as where some of your symptoms are concerned, I only had multi-jointed arthritis syndrome prior to my diagnoses of SLE with Nephritis over 4 &...
Bob Cabrera
flash_sphere
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Dec 21, 2007
9:57 am

Dale, Welcome, sorry the doctor's have not come up with a diagnosis yet. My trek with Lupus started with a rash and kept progressing. Now for the most part...
James Thompson
tigerjlt
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Dec 23, 2007
4:48 am
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