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Medical Forum / Diseases and Disorders / Lupus / September 2005

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Mo - 15 Sep 2005 07:26 GMT
Hi,
Was just surfing and found your group.
I've had Lupus for 17 years now and just want to be able to chat with
other people who know what it's like.
Sherry - 15 Sep 2005 18:07 GMT
Welcome to the group.

Sherry

> Hi,
> Was just surfing and found your group.
> I've had Lupus for 17 years now and just want to be able to chat with
> other people who know what it's like.
Cynthia Ward - 15 Sep 2005 20:30 GMT
Welcome you have found a very good and special site. i have been
battling Lupus SLE CNS 7and a half years And Added adventures due to
treatment Please feel free to vent, chat, share, ask whatever you need
Cindy W.

>Welcome to the group.
>
[quoted text clipped - 10 lines]
>
>  
Beverley - 16 Sep 2005 14:17 GMT
Hi Mo, welcome to the group. We're friendly bunch of folks. We've got two
great FAQ sites filled with some the best info on lupus. (Now if I could
just find the those URLs - I know someone will find them for you.)
Bev

> Hi,
> Was just surfing and found your group.
> I've had Lupus for 17 years now and just want to be able to chat with
> other people who know what it's like.
Andy - 16 Sep 2005 15:29 GMT
>Hi Mo, welcome to the group. We're friendly bunch of folks. We've got two
>great FAQ sites filled with some the best info on lupus. (Now if I could
>just find the those URLs - I know someone will find them for you.)

http://www.northeastlupus.org.uk/katfaq
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Beverley - 17 Sep 2005 06:11 GMT
Thanks, Andy!
Bev

> >Hi Mo, welcome to the group. We're friendly bunch of folks. We've got two
> >great FAQ sites filled with some the best info on lupus. (Now if I could
> >just find the those URLs - I know someone will find them for you.)
>
> http://www.northeastlupus.org.uk/katfaq
BJ - 17 Sep 2005 17:17 GMT
Hi Mo,
I am glad you found us. Welcome to the group. How has your lupus affected
you? Tell us about yourself, if you don't mind sharing.
BJ-Sk. Canada
> Hi,
> Was just surfing and found your group.
> I've had Lupus for 17 years now and just want to be able to chat with
> other people who know what it's like.
Mo - 17 Sep 2005 19:01 GMT
I have sle nephritis.I was diagnosed in 1988 just before i had a major
flare, lost 80% of my renal function but I've been lucky and regained
most of it. Went through lots of cyclophosphomide treatments and
prednisone. My renal function seems to stay pretty stable as long as I
keep my BP under control, we've been able to catch the rest of the
flares early enough so that they haven't been as serious.  Went through
menopause in 1993, age 26, that was an adventure trying to get the docs
to believe it. They don't know why, probably the cyclophosphomide.
Diagnosed with osteo in '97, from the prednisone. My body seems to be
20-25 years ahead of itself. Started on anti-depressents in '99, they
have been a miracle. I still get lots of joint pain, my hubby says he
trusts my body more than any weatherman, muscle pain. I think the
fatigue is the worst though, the docs keep telling me it's normal but
there must be something I can take to help.
Anyhow enough of that, BJ I see you're from SK, I'm from AB. Almost
neighbors eh?
Mo
lehill1 - 17 Sep 2005 20:31 GMT
The best thing for fatigue is Provigil.......it is an anti-narcolepsy
medication...and is wonderful!!!!!!!

ask for it!!!!!!!!!!!!
good luck!
Lisa

>I have sle nephritis.I was diagnosed in 1988 just before i had a major
> flare, lost 80% of my renal function but I've been lucky and regained
[quoted text clipped - 13 lines]
> neighbors eh?
> Mo
BJ - 18 Sep 2005 17:53 GMT
Hi Mo,
Yes, I guess we are practically neighbours. We can commiserate about the
cold when winter comes. You have taught me something already. I did not know
that lost kidney function could be restored. Good news for you there. I know
what you mean about muscle pain. I suffer from that too, along with bone
pain. Not easy most days. Lupus has done a number on my blood. I always joke
with the doctors about my "crud blood." Am not sure that Sk. docs know what
they are doing. Hope you have good ones there in AB. Look forward to getting
to know you better.
BJ-Sk. Canada
> I have sle nephritis.I was diagnosed in 1988 just before i had a major
> flare, lost 80% of my renal function but I've been lucky and regained
[quoted text clipped - 13 lines]
> neighbors eh?
> Mo
janersagain - 19 Sep 2005 20:10 GMT
Hi Mo
sorry I am late, as usual.   Please know you are very welcome here and like
the rest say, ask us anything and someone will be ready for answers to
help.

good luck
and Keep posting
janers
 
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