|
Home > Archive > Lupus Support > June 2006 > Scleroderma
You are viewing an archived Text-only version of the thread.
To view this thread in it's original format and/or if you want to reply to
this thread please [click here]
|
|
| Ruth Tay 2006-06-08, 4:27 pm |
|
Yesterday I had an endoscopy because swallowing was difficult. The
diagnoses is scleroderma of the the esophagus. There have been
no suggestions of further treatment because they have me on
prednisone, nexium, and plaquenil already. Does anyone out there
have scleroderma in addition to the lupus. Help!!! ruth
| |
|
| In article <ruthtay-DA5F55.11290308062006@cnews.newsguy.com>, Ruth Tay
<ruthtay@mcn.org> wrote
>
>Yesterday I had an endoscopy because swallowing was difficult. The
>diagnoses is scleroderma of the the esophagus. There have been
>no suggestions of further treatment because they have me on
>prednisone, nexium, and plaquenil already. Does anyone out there
>have scleroderma in addition to the lupus. Help!!! ruth
It's no consolation, but several people seem to have this; no miracle
cure has yet been mentioned 
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| janers 2006-06-08, 9:39 pm |
| I have some signs of scleroderma, told when diagnosed with lupus.
But nothing found ever on the esophagus studies.
There is a disease called CREST that has scleroderma in it. I can't for the
life of me tell you more right now Ruthie.
LET me look into it and see what I can find.
Are you throwing up any?? Or the food just won't go down right with
swallowing?
DId the doc say it is up high or lower in the esophagus. You need to get a
copy of that report....ok?
Hang in there, it ain't that bad. right???
hugs
sarge
| |
| Ruth Tay 2006-06-08, 9:39 pm |
| In article <Viy6$NTmcHiEFwLn@kitzbuhel.demon.co.uk>,
Andy <andy@kitzbuhel.demon.co.uk> wrote:
Thanks for trying Andy. I am still trying to find the fairy
godmother with the magic wand that will get rid of
all these auto-immune diseases. ruth
> In article <ruthtay-DA5F55.11290308062006@cnews.newsguy.com>, Ruth Tay
> <ruthtay@mcn.org> wrote
>
> It's no consolation, but several people seem to have this; no miracle
> cure has yet been mentioned
| |
| vicky w 2006-06-09, 2:29 am |
| i've got CREST in addition to Lupus.
also dermatomyositis.
had really bad swallowing problems when i was first diagnosed, 4 years
ago. I stopped eating because swallowing anything would make me choke.
I lived off of slimfasts for several months, till I found a
rheumatologist that would listen to me. they seemed to think the problem
was more because of the muscle disease, but who knows.
he sent me to speech and dysphagia therapy. in additon to the speech
therapy, they did something called DPNS- deep pharangyl <sp?>
neurologicial stimulation - or something like that
sounds nuts - but the treatment was to stimulate my muscles in my throat
to get em working again, with - frozen lemon swabs . they actually put
them in my throat to make me gag- one of the worst things i've gone
thru, but it helped.
so much that i gained back all the weight i lost , and more - course,
they had me on prednisone and methx, also, but i think this treatment
helped the most.
talk to your dr about maybe referring you to a speech pathologist -
can't hurt !
it helped me soooo much !
vicky
| |
| Nicole 2006-06-09, 4:27 pm |
| Ruth
HUGS!
I'm so sorry for your diagnosis.
There are many names and sub forms of scleroderma
Synonyms
a.. Progressive Systemic Sclerosis
b.. PSS
c.. Sclerosis, Familial Progressive Systemic
d.. Systemic Sclerosis
Disorder Subdivisions
a.. Morphea
b.. Linear Scleroderma
c.. CREST Syndrome
Here are some sites to research.....
NIAMS NIH has info that'll they'll mail out to you (they have all types-
osteo, RA, SLE, FMS, etc,etc
Good luck and my prayers are with you!!!!
Nicole
Scleroderma Research Foundation
220 Montgomery Street
Suite 1411
San Francisco, CA 94104
USA
Tel: 4158349444
Fax: 4158349177
Tel: 8004412873
Email: info@scleroderma RESEARCH.org
Internet: http://www.srfcure.org
Scleroderma Foundation
12 Kent Way, Suite 101 Byfield, MA 01922
Byfield, MA 01922
USA
Tel: 9784635843
Fax: 9784635809
Tel: 8007224673
Email: sfinfo@sceroderma.org
Internet: http://www.scleroderma.org
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information
Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: 3014954484
Fax: 3017186366
Tel: 8772264267
TDD: 3015652966
Email: niamsinfo@mail.nih.gov
Internet: http://www.niams.nih.gov
"Ruth Tay" <ruthtay@mcn.org> wrote in message
news:ruthtay-DA5F55.11290308062006@cnews.newsguy.com...
>
> Yesterday I had an endoscopy because swallowing was difficult. The
> diagnoses is scleroderma of the the esophagus. There have been
> no suggestions of further treatment because they have me on
> prednisone, nexium, and plaquenil already. Does anyone out there
> have scleroderma in addition to the lupus. Help!!! ruth
| |
| Nicole 2006-06-09, 4:27 pm |
| Somehow I messed up this site
Scleroderma Research Foundation
> 220 Montgomery Street
> Suite 1411
> San Francisco, CA 94104
> USA
> Tel: 4158349444
> Fax: 4158349177
> Tel: 8004412873
> Email: info@sclerodermaRESEARCH.org
> Internet: http://www.srfcure.org
>
"Nicole" <me@hotmail.com> wrote in message
news:Nbfig.386$MF6.359@tornado.socal.rr.com...
> Ruth
> HUGS!
> I'm so sorry for your diagnosis.
> There are many names and sub forms of scleroderma
> Synonyms
> a.. Progressive Systemic Sclerosis
> b.. PSS
> c.. Sclerosis, Familial Progressive Systemic
> d.. Systemic Sclerosis
> Disorder Subdivisions
>
> a.. Morphea
> b.. Linear Scleroderma
> c.. CREST Syndrome
> Here are some sites to research.....
> NIAMS NIH has info that'll they'll mail out to you (they have all types-
> osteo, RA, SLE, FMS, etc,etc
> Good luck and my prayers are with you!!!!
>
> Nicole
> Scleroderma Research Foundation
> 220 Montgomery Street
> Suite 1411
> San Francisco, CA 94104
> USA
> Tel: 4158349444
> Fax: 4158349177
> Tel: 8004412873
> Email: info@scleroderma RESEARCH.org
> Internet: http://www.srfcure.org
>
> Scleroderma Foundation
> 12 Kent Way, Suite 101 Byfield, MA 01922
> Byfield, MA 01922
> USA
> Tel: 9784635843
> Fax: 9784635809
> Tel: 8007224673
> Email: sfinfo@sceroderma.org
> Internet: http://www.scleroderma.org
>
> NIH/National Arthritis and Musculoskeletal and Skin Diseases Information
> Clearinghouse
> 1 AMS Circle
> Bethesda, MD 20892-3675
> USA
> Tel: 3014954484
> Fax: 3017186366
> Tel: 8772264267
> TDD: 3015652966
> Email: niamsinfo@mail.nih.gov
> Internet: http://www.niams.nih.gov
>
> "Ruth Tay" <ruthtay@mcn.org> wrote in message
> news:ruthtay-DA5F55.11290308062006@cnews.newsguy.com...
>
>
|
| |
|
|