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Home > Archive > Lupus Support > October 2004 > Change in diagnosis
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Change in diagnosis
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| saskie 2004-10-14, 7:13 pm |
| Hi;
I have had Sjogren's Syndrome for about 6 years; lately I have some weird
things happening. I have nodules in the muscle of my upper thigh and also
in the upper arm; also lots of bruises. Right down the bone[radius I think]
there are nodules. My Dr. said I have symptoms that are not usual with
Sjogrens and thinks it is Lupus instead. I have to wait to see the
Rheumatologist in Saskatoon as BJ can probably identfy with although you are
closer to Regina than Saskatoon I think. I also get a pain in my side when
I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
just wanted to say hello from south west Saskatchewan, Canada.
CR
| |
|
| saskie wrote:
> Hi;
> I have had Sjogren's Syndrome for about 6 years; lately I have some weird
> things happening. I have nodules in the muscle of my upper thigh and also
> in the upper arm; also lots of bruises. Right down the bone[radius I think]
> there are nodules. My Dr. said I have symptoms that are not usual with
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you are
> closer to Regina than Saskatoon I think. I also get a pain in my side when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
> CR
Welcome to alt.support.lupus CR
and hello to a fellow Canadian
Talk to us anytime.
J
| |
| Sherry 2004-10-14, 7:13 pm |
| Welcome to the group.
Sherry
"saskie" <saskiehometown64@hotmail.com> wrote in message
news:10mta9gbqrrttc1@corp.supernews.com...
> Hi;
> I have had Sjogren's Syndrome for about 6 years; lately I have some weird
> things happening. I have nodules in the muscle of my upper thigh and also
> in the upper arm; also lots of bruises. Right down the bone[radius I
think]
> there are nodules. My Dr. said I have symptoms that are not usual with
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you
are
> closer to Regina than Saskatoon I think. I also get a pain in my side
when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
> CR
>
>
| |
|
| "saskie" <saskiehometown64@hotmail.com> wrote in message
news:10mta9gbqrrttc1@corp.supernews.com...
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you
are
> closer to Regina than Saskatoon I think. I also get a pain in my side
when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
Hi Saskie,
I hope that things go well and you get good treatment. Sjogren's can
include some of the joint pain and problems of SLE. The "problem" with
autoimmune disease is that it is so highly variable. In some sense, most
autoimmune diseases (with the exception of obvious genetic types that are
rare) are just categorizations of the same basic problem. So having
overlapping or changing diagnoses is not unusual.
the bruising could be a number of things caused by autoimmune disease but do
make sure you get tested for Anti-phospholipid syndrome. You can find more
about in the FAQ listed below. This involves two tests usually - the
Anti-cardiolipid Antibody test (ACA) and the Lupus Anti-coagulant test (LA.)
Again, these are discussed in the FAQ in more detail.
But there are other causes - one is a low platelet count due to autoimmune
activity (this is one I have on a cyclic basis.)
Best wishes,
kcat
--
For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet
For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/
| |
| Shelagh 2004-10-14, 7:13 pm |
| Hi to our new Canadian member CR!
You have a cohort also from Sask. living in the qu'appelle valley area I
think?
BJ, our prairie chicken, who usually greets everyone new will pop up soon.
Welcome and stay and chat... share your problems, ask questions and there is
always someone who can relate or help you.
Nice to see you here!
RE your sjogrens vs. lupus- I have been dx'd with SLE and secondary sjogrens
(meaning I have sjogrens, and raynauds as well, and have both because of the
lupus)
so maybe that is what is happening with you?
FWIW, HTH
from Shelagh in BC
"saskie" <saskiehometown64@hotmail.com> wrote in message
> Hi;
> I have had Sjogren's Syndrome for about 6 years; lately I have some weird
> things happening. I have nodules in the muscle of my upper thigh and also
> in the upper arm; also lots of bruises. Right down the bone[radius I
> think]
> there are nodules. My Dr. said I have symptoms that are not usual with
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you
> are
> closer to Regina than Saskatoon I think. I also get a pain in my side
> when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
> CR
| |
| mildredskidnospam_atall@comcast.net 2004-10-15, 2:08 am |
| On Thu, 14 Oct 2004 21:53:47 GMT, "Shelagh" <tiderington@shaw.ca>
wrote:
>Hi to our new Canadian member CR!
>You have a cohort also from Sask. living in the qu'appelle valley area I
>think?
>BJ, our prairie chicken, who usually greets everyone new will pop up soon.
>Welcome and stay and chat... share your problems, ask questions and there is
>always someone who can relate or help you.
>Nice to see you here!
>RE your sjogrens vs. lupus- I have been dx'd with SLE and secondary sjogrens
>(meaning I have sjogrens, and raynauds as well, and have both because of the
>lupus)
>so maybe that is what is happening with you?
>FWIW, HTH
>from Shelagh in BC
>
>"saskie" <saskiehometown64@hotmail.com> wrote in message
>
Hello and welcome to the group.
I was originally dx'd with scleroderma w/ features of lupus. My
current rheumy (1600 miles from my former one) says it's "only" lupus
though I may have fibromyalgia, too.
It can get mighty confuzzling.
| |
| saskie 2004-10-15, 11:08 am |
| Thank you so much everyone for the replies; especially the FAQ'S ; that was
very helpful. Had more blood drawn this morning and will see the Rheumy
next week.
CR
"saskie" <saskiehometown64@hotmail.com> wrote in message
news:10mta9gbqrrttc1@corp.supernews.com...
> Hi;
> I have had Sjogren's Syndrome for about 6 years; lately I have some weird
> things happening. I have nodules in the muscle of my upper thigh and also
> in the upper arm; also lots of bruises. Right down the bone[radius I
think]
> there are nodules. My Dr. said I have symptoms that are not usual with
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you
are
> closer to Regina than Saskatoon I think. I also get a pain in my side
when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
> CR
>
>
| |
| Beverley 2004-10-15, 10:08 pm |
| Hi and welcome,
I'm a wee bit behind on things around here. You don't have to have lupus to
hang out here. Not everyone here has lupus. We share the good stuff called
(CGT = cheesy good things) as well as the bad.
Bev
"saskie" <saskiehometown64@hotmail.com> wrote in message
news:10mta9gbqrrttc1@corp.supernews.com...
> Hi;
> I have had Sjogren's Syndrome for about 6 years; lately I have some weird
> things happening. I have nodules in the muscle of my upper thigh and also
> in the upper arm; also lots of bruises. Right down the bone[radius I
think]
> there are nodules. My Dr. said I have symptoms that are not usual with
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you
are
> closer to Regina than Saskatoon I think. I also get a pain in my side
when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
> CR
>
>
| |
|
| saskie wrote:
> I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you are
> closer to Regina than Saskatoon I think. I also get a pain in my side when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
Hi CR,
How do you know? Did you check out (where BJ is on) Shelagh's map?
Just wondering,
Hugs
J
| |
|
| saskie wrote:
> Thank you so much everyone for the replies; especially the FAQ'S ; that was
> very helpful. Had more blood drawn this morning and will see the Rheumy
> next week.
> CR
Let us know how it goes. Looks like they're rushing you in or were you on a wait
list for a while?
Rheumy's are hard to get to in many parts of Canada.
Hugs
J
| |
|
| mildredskidnospam_atall@comcast.net wrote:
> Hello and welcome to the group.
>
> I was originally dx'd with scleroderma w/ features of lupus. My
> current rheumy (1600 miles from my former one) says it's "only" lupus
> though I may have fibromyalgia, too.
>
> It can get mighty confuzzling.
confuzzling, I like that word. Hope to hear more from you
I'll say welcome to you too, because either I have brainfog or I don't remember
you, hee hee.
Hugs
J
| |
|
| mildredskidnospam_atall@comcast.net wrote:
> I was originally dx'd with scleroderma w/ features of lupus. My
> current rheumy (1600 miles from my former one) says it's "only" lupus
> though I may have fibromyalgia, too.
>
> It can get mighty confuzzling.
huh ! "only lupus" ?
Do you have to drive 1600 miles to go to the rheumy ?
Yikes !
J
| |
|
| Well hello and welcome to you. I think that Sjogren's and lupus often
overlap. I hope the rheumy can straighten all of this out for you. I have
heard that Saskatoon has a better group of rheumatologist than are found in
Regina. At the moment, we only have two here. One is on leave until January
and the other one is disliked by all. ( I am being kind in my comment about
that one. ) Not much choice, you might say. There is a Dr. Markland in
Saskatoon who, I am told, is very nice. I know someone from Moose Jaw who
sees her and finds her quite good. Please let us know how your appt goes. We
are here to listen and share. I am a bit late in my welcome. I apologize
for that. It is nice to meet someone else from Sk. We can join forces to
complain about the cold of our prairie winters. We had snow yesterday
morning. Gad, I hate winter!
BJ-Sk. Canada
"saskie" <saskiehometown64@hotmail.com> wrote in message
news:10mta9gbqrrttc1@corp.supernews.com...
> Hi;
> I have had Sjogren's Syndrome for about 6 years; lately I have some weird
> things happening. I have nodules in the muscle of my upper thigh and also
> in the upper arm; also lots of bruises. Right down the bone[radius I
think]
> there are nodules. My Dr. said I have symptoms that are not usual with
> Sjogrens and thinks it is Lupus instead. I have to wait to see the
> Rheumatologist in Saskatoon as BJ can probably identfy with although you
are
> closer to Regina than Saskatoon I think. I also get a pain in my side
when
> I take a deep breath, I found this in a list of Lupus symptoms. Anyway I
> just wanted to say hello from south west Saskatchewan, Canada.
> CR
>
>
| |
| Beverley 2004-10-16, 11:08 am |
| Snow? Brrrrrrrr. We haven't even had our first frost.
Bev
"BJ" <Babs@sk.nojunk.ca> wrote in message
news:10n2e2i5pjll7d9@corp.supernews.com...
> Well hello and welcome to you. I think that Sjogren's and lupus often
> overlap. I hope the rheumy can straighten all of this out for you. I have
> heard that Saskatoon has a better group of rheumatologist than are found
in
> Regina. At the moment, we only have two here. One is on leave until
January
> and the other one is disliked by all. ( I am being kind in my comment
about
> that one. ) Not much choice, you might say. There is a Dr. Markland in
> Saskatoon who, I am told, is very nice. I know someone from Moose Jaw who
> sees her and finds her quite good. Please let us know how your appt goes.
We
> are here to listen and share. I am a bit late in my welcome. I apologize
> for that. It is nice to meet someone else from Sk. We can join forces to
> complain about the cold of our prairie winters. We had snow yesterday
> morning. Gad, I hate winter!
> BJ-Sk. Canada
> "saskie" <saskiehometown64@hotmail.com> wrote in message
> news:10mta9gbqrrttc1@corp.supernews.com...
weird[vbcol=seagreen]
also[vbcol=seagreen]
> think]
> are
> when
I[vbcol=seagreen]
>
>
| |
| Shelagh 2004-10-16, 7:11 pm |
| Did you brother ever get his dx or a decent doc to get a referral to a
specialist? Is he still in the interior here in BC?
from Shelagh (just curious, you haven't said much lately, about him)
"J" <version@anon.anon> wrote in message
> Let us know how it goes. Looks like they're rushing you in or were you on
> a wait
> list for a while?
> Rheumy's are hard to get to in many parts of Canada.
> Hugs
> J
| |
| Shelagh 2004-10-16, 7:11 pm |
| "J" <version@anon.anon> wrote in message
> mildredskidnospam_atall@comcast.net wrote:
>
> huh ! "only lupus" ?
> Do you have to drive 1600 miles to go to the rheumy ?
> Yikes !
> J
HUH! I would love to see that 'rheumy' of yours deal with a dx of 'only
lupus' and see how s/he handles it!!......granted, sometimes it can be 'only
lupus' but most times it is 'OMG LUPUS' cause of the hellish
symptoms/flares!!
JMO.... fwiw
from Shelagh
| |
| mildredskidnospam_atall@comcast.net 2004-10-16, 7:11 pm |
| On Sat, 16 Oct 2004 16:33:22 GMT, "Shelagh" <tiderington@shaw.ca>
wrote:
>"J" <version@anon.anon> wrote in message
>
>HUH! I would love to see that 'rheumy' of yours deal with a dx of 'only
>lupus' and see how s/he handles it!!......granted, sometimes it can be 'only
>lupus' but most times it is 'OMG LUPUS' cause of the hellish
>symptoms/flares!!
>JMO.... fwiw
>from Shelagh
>
Only as opposed to also with scleroderma. I have lots of stuff that
may be related to the lupus.
| |
| mildredskidnospam_atall@comcast.net 2004-10-16, 7:11 pm |
| On Sat, 16 Oct 2004 04:51:32 -0400, J <version@anon.anon> wrote:
>mildredskidnospam_atall@comcast.net wrote:
>
>
>huh ! "only lupus" ?
>Do you have to drive 1600 miles to go to the rheumy ?
>Yikes !
>J
I moved 1600 miles east of my former rheumy. Nah, I wouldn't care for
that commute.
| |
| mildredskidnospam_atall@comcast.net 2004-10-16, 7:11 pm |
| On Sat, 16 Oct 2004 16:33:22 GMT, "Shelagh" <tiderington@shaw.ca>
wrote:
>"J" <version@anon.anon> wrote in message
>
>HUH! I would love to see that 'rheumy' of yours deal with a dx of 'only
>lupus' and see how s/he handles it!!......granted, sometimes it can be 'only
>lupus' but most times it is 'OMG LUPUS' cause of the hellish
>symptoms/flares!!
>JMO.... fwiw
>from Shelagh
>
I failed to carry my medical records under my arm or in a crate to New
Jersey and the lines of communication between New Jersey and Missouri
are goodness awful. This rheumy is doing tests and trying to get up to
speed. I've only seen him a couple of times so far. Took me two years
to find him. My PCP was prescribing the necessary meds.
| |
| mildredskidnospam_atall@comcast.net 2004-10-16, 7:11 pm |
| On Sat, 16 Oct 2004 04:50:22 -0400, J <version@anon.anon> wrote:
>mildredskidnospam_atall@comcast.net wrote:
>
>
>confuzzling, I like that word. Hope to hear more from you
>I'll say welcome to you too, because either I have brainfog or I don't remember
>you, hee hee.
>Hugs
>J
I posted off and on from various email addresses (always Nell, once
Nana but I don't know if to this group w/ that). More off than on,
sorry to say.
Thank you for the welcome. 
| |
|
| mildredskidnospam_atall@comcast.net wrote:
> On Sat, 16 Oct 2004 04:50:22 -0400, J <version@anon.anon> wrote:
>
>
> I posted off and on from various email addresses (always Nell, once
> Nana but I don't know if to this group w/ that). More off than on,
> sorry to say.
>
> Thank you for the welcome.
Well, under whatever name, you're welcome and if you change names, we'll tell you
again.
Hugs
J
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