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From: Miss Shelby on 13 Feb 2006 20:38
Hi all out there,
I am delighted to find this newsgroup! I''ve been looking for resources and
information on this crazy disease.
I just turned 38 in November and have spent the past 8 months being sickly,
finally finding out what ails me. I have the systemic sclerosis sine
scleroderma, meaning scleroderma without the skin tightening. I know it
sounds nuts but I was grateful for a diagnosis after going into kidney
failure in May and no one answering the question of how it happened. I met
with a Specialist Rheum doctor on 1/31, he looked at me for 3 seconds and
said Scleroderma? We went through my unusual health history and he said
definitely scleroderma but without the skin tightening. It only happens that
way in about 9% of the people that get the diffuse. Am I lucky or what?
For the most part I am basically healthy for now, other than the dialysis
3x's a week. I don't suffer from skin issues, other than those tiny red
spots, telangiectasia, on my face which come and go depending on how
activated the immune system is at the time. I do have this crazy sticky
mucus down my throat, plus that Sjogrens and Raynauds likes to hit me often
at the worst possible moments. I learned from the specialist that this wierd
numbing, tingling sensation around my nostrils is actually the scleroderma
attacking my nerve endings around my nose.
Since the 31st I have been doing a lot of research on this disease. I found
that I need to see a cardio, a pulminary and most important at this time, a
gastro. These are the areas that will most likely become afflicted. I
already have the pericardal effusion, but that is common in kidney failure
patients. We are keeping an eye on it.
As far as the gastro thing goes, unless I knew Scleroderma could cause
complications I would have just thought I was having really bad belly gas. I
swell up after meals and it takes a hot bath to calm the gas pains down.
After reading about the gastro complications of scleroderma I realized it
wasn't just gas. I saw a gastro Dr today and now I get to have a colonoscopy
first, before he treats me as if scleroderma is attacking my intestines.
Doesn't make sense to me but drs sometimes arent the most logical people. I
already had an endoscopy done in June, and my gallbladder was taken out in
July. For now I just want relief from the pains of eating!

I read through most of the postings and did not see one person who has the
kidney failure, are there any out there?
Apparantly if my blood work wasn't so insane someone could have put 1+1
together and saved my kidneys from the sclerodermic renal crisis...I didn't
get that lucky.

My youngest son said "mom you must have did terrible things for this to
happen to you, you're such a nice lady." My reply to him was that I am
strong and I am handling it. If anything I will teach these doctors to think
outside the box which will help the next person who may not be as strong,
and I can live with that.

I look forward to reading this newsgroup daily, hoping to learn and share
with others like me, diagnosed with a crazy disease, just trying to make the
best of it all!

Michelle


From: Dave Wilcher on 13 Feb 2006 23:43
Miss Shelby wrote:
> Hi all out there,
> I am delighted to find this newsgroup! I''ve been looking for
> resources and information on this crazy disease.
> I just turned 38 in November and have spent the past 8 months being
> sickly, finally finding out what ails me. I have the systemic
> sclerosis sine scleroderma, meaning scleroderma without the skin
> tightening. I know it sounds nuts but I was grateful for a diagnosis
> after going into kidney failure in May and no one answering the
> question of how it happened. I met with a Specialist Rheum doctor on
> 1/31, he looked at me for 3 seconds and said Scleroderma? We went
> through my unusual health history and he said definitely scleroderma
> but without the skin tightening. It only happens that way in about 9%
> of the people that get the diffuse. Am I lucky or what? For the most part
> I am basically healthy for now, other than the
> dialysis 3x's a week. I don't suffer from skin issues, other than
> those tiny red spots, telangiectasia, on my face which come and go
> depending on how activated the immune system is at the time. I do
> have this crazy sticky mucus down my throat, plus that Sjogrens and
> Raynauds likes to hit me often at the worst possible moments. I
> learned from the specialist that this wierd numbing, tingling
> sensation around my nostrils is actually the scleroderma attacking my
> nerve endings around my nose. Since the 31st I have been doing a lot of
> research on this disease. I
> found that I need to see a cardio, a pulminary and most important at
> this time, a gastro. These are the areas that will most likely become
> afflicted. I already have the pericardal effusion, but that is common
> in kidney failure patients. We are keeping an eye on it.
> As far as the gastro thing goes, unless I knew Scleroderma could cause
> complications I would have just thought I was having really bad belly
> gas. I swell up after meals and it takes a hot bath to calm the gas
> pains down. After reading about the gastro complications of
> scleroderma I realized it wasn't just gas. I saw a gastro Dr today
> and now I get to have a colonoscopy first, before he treats me as if
> scleroderma is attacking my intestines. Doesn't make sense to me but
> drs sometimes arent the most logical people. I already had an
> endoscopy done in June, and my gallbladder was taken out in July. For
> now I just want relief from the pains of eating!
> I read through most of the postings and did not see one person who
> has the kidney failure, are there any out there?
> Apparantly if my blood work wasn't so insane someone could have put
> 1+1 together and saved my kidneys from the sclerodermic renal
> crisis...I didn't get that lucky.
>
> My youngest son said "mom you must have did terrible things for this
> to happen to you, you're such a nice lady." My reply to him was that
> I am strong and I am handling it. If anything I will teach these
> doctors to think outside the box which will help the next person who
> may not be as strong, and I can live with that.
>
> I look forward to reading this newsgroup daily, hoping to learn and
> share with others like me, diagnosed with a crazy disease, just
> trying to make the best of it all!

Michelle, your positive attitude is wonderful. I don't have kidney problems,
but do have skin tightening. But I believe my positive attitude is more to
do with the stabilizing of my disease then any of the medicine.
This newsgroup isn't extremely active, but there are a number of us who
read it and post occasionally. Welcome!
And the best of luck to you.

dave
--
A person who won't read has no advantage over one who can't read.
-Mark Twain


From: David Segall on 14 Feb 2006 07:35
"Miss Shelby" <mikeswifeshell(a)comcast.net> wrote:
>My youngest son said "mom you must have did terrible things for this to
>happen to you, you're such a nice lady." My reply to him was that I am
>strong and I am handling it. If anything I will teach these doctors to think
>outside the box which will help the next person who may not be as strong,
>and I can live with that.
I was very distressed to read you post. About the only improvement in
the treatment of scleroderma is the ability to prevent hypertension by
monitoring blood pressure. I do hope that you don't agree, in any way,
with your son's comment. Where did he get the idea that people who are
suffering are being punished?

As for "teaching doctors to think outside the box" may I suggest you
visit an "ambulance chasing" lawyer. I don't know if your doctors have
been negligent but, if so, a financial penalty is an effective lesson
and I'm sure you could use the money.
>
>I look forward to reading this newsgroup daily, hoping to learn and share
>with others like me, diagnosed with a crazy disease, just trying to make the
>best of it all!
This group is fairly quiet although everyone is very helpful and
supportive if you post. My wife, who actually has the disease,
subscribes to the MSN mailing list <http://groups.msn.com/Sclero>
which is more active.
From: Miss Shelby on 15 Feb 2006 05:07
Thanks for the warm welcome Dave!
I agree that attitude has everything to do with the day's outcome.
I try to stay positive even when I am feeling down. I have learned to make a
lot of lemonade in these past 8 months!
Last week was horrid, but I keep the thought that even the worst day of your
life can only last 24 hours.
Thanks again for the welcome, see ya round the boards!

Michelle


From: Amie on 13 Mar 2006 12:50
Hi Michelle! This is a very tardy response, so I'm wondering how
you're doing now? I hope the medication you're on for your BP is an
ACE inhibitor - you've probably run into information about Scleroderma
Renal Crisis, but if not, here's a great article:
http://www.scleroderma.org/medical/renal_articles/korn_2003_1.shtm

I had the classic beginnings of SRC in 2001 (BP up to 213/131 in a
week,) but fortunately saw Dr Mayes shortly after it started and she
got me on an ACE inhibitor right away. My kidney functions never got
to the level of requiring dialysis and have returned to normal, even!
I'm constantly wary of my BP, which now dives down about 3-4 times a
year requiring me to drop meds then add them back on as it rises. Very
odd, and so far no doc knows why. <sigh!>

I'd suggest you see a scleroderma specialist if you can. As much as
our local rheumys try, there's just no comparison between their
experience with a few patients in their lifetime and the scleroderma
doc's experience with hundreds. In the middle of a terrible flare that
was making me incredibly sick, I felt very comforted knowing that such
an experienced doc was watching over me.

You are a rare zebra among zebras, with scleroderma sine scleroderma!
I bet ALL the med students are shipped in to see you during your
appointments! Believe it or not, I do actually know of another SDer
who not only had scleroderma sine scleroderma, but her presenting
symptom was kidney crisis without an increase in BP. Her docs must
have been completely confused.

Amie

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