Scleroderma Information » Scleroderma » Localized to Generalized?
Question:
i’m kind of confused, because when i was diagnosed, my doctor didn’t tell me much except that he didn’t know much, and to go to a rheumatologist, and when i did, he said it was localized and there wasnt’ anything he (or anyone else) could do… and said there "wasn’t much risk" that it would "go general" … having read everything i can … what is the risk? i’m really confused, feeling really stupid, and would like to know. right now, the patch that started a couple years ago on my arm is still growing, and is now on my lower arm, and developing on my hand also. but it hasn’t gone past my shoulder… anyway what i wanted to know was what the risks are, and what i can do to avoid having the little ulcers and "pops" that keep happening… because it takes months to heal the little sores. i stopped swimming becasue the chlorine seems to irritate it. oh yeah, and i had another question: is a suppressed/weak immune system part of the localized kind of scleroderma? or is it just me? wonderfemme
Response:
I thought that first paragraph was nutty, too. I’ve heard others talk about morphea all over. Systemic scleroderma has that same problem about drugs. Is it the drug or the course of the disease when symptoms ease? Seems we’ll all be fighting this until they figure out how to tell the difference. "LJL" <l…@nac.net> wrote in message news:3AD4FB95.8F938F6@nac.net… > Ooooooookaaaaayyy, now I have questions, too! > Amelia Yaussy wrote: > > All the information I’ve read about localized scleroderma indicates it
is extremely unlikely that it will become generalized. This is from WebMD: > Localized Scleroderma > Localized scleroderma usually affects only the skin on the hands and > face.>> > My diagnosis says localized….but…it’s not just on my hands (which > never got bad) and I never got more than few dots on my face, and > they’re gone, now. > I did get the morphea all over my shins,(the worst place) shoulders, > chest and an awful lot of my torso, front and back. What the heck!? > >> Its course is very slow and it rarely, if ever, becomes systemic or
causes severe complications. There are two primary forms of localized scleroderma: > > morphea and linear scleroderma. > > Morphea Scleroderma. In morphea scleroderma patches of hard skin form
and can persist for up to years. Eventually, however, they may improve or even disappear.>> – Hide quoted text — Show quoted text -> Neither the doc nor I are ever gonna know if it has stabilized, due to > the pencylamine and in most place disappeared, or if the morphea has > just run it’s course. > Jo > NJ
Response:
Thanks, Barbara, for the reply. I haven’t had any new outbreaks in well over a year, so I think the morphea has run it’s course. You’re right about no two cases being the same, everyone I read about has something different or different combinations of symptoms. Still, everytime I get itchy anywhere, I have to check and examine the skin. LOLs! Jo NJ
Response:
All the information I’ve read about localized scleroderma indicates it is extremely unlikely that it will become generalized. This is from WebMD: Localized Scleroderma Localized scleroderma usually affects only the skin on the hands and face. Its course is very slow and it rarely, if ever, becomes systemic or causes severe complications. There are two primary forms of localized scleroderma: morphea and linear scleroderma. Morphea Scleroderma. In morphea scleroderma patches of hard skin form and can persist for up to years. Eventually, however, they may improve or even disappear. Linear Scleroderma. Linear scleroderma causes bands of hard skin across the face or on a single arm or leg. Linear scleroderma may also involve muscle or bone. In rare cases, if this variant affects children or young adults, it may impair growth. "SSaffie78" <ssaffi…@aol.com> wrote in message
news:20010411193352.27106.00006584@ng-ch1.aol.com… – Hide quoted text — Show quoted text -> i’m kind of confused, because when i was diagnosed, my doctor didn’t tell me > much except that he didn’t know much, and to go to a rheumatologist, and when i > did, he said it was localized and there wasnt’ anything he (or anyone else) > could do… and said there "wasn’t much risk" that it would "go general" … > having read everything i can … what is the risk? i’m really confused, > feeling really stupid, and would like to know. right now, the patch that > started a couple years ago on my arm is still growing, and is now on my lower > arm, and developing on my hand also. but it hasn’t gone past my shoulder… > anyway what i wanted to know was what the risks are, and what i can do to avoid > having the little ulcers and "pops" that keep happening… because it takes > months to heal the little sores. i stopped swimming becasue the chlorine seems > to irritate it. > oh yeah, and i had another question: is a suppressed/weak immune system part > of the localized kind of scleroderma? or is it just me? > wonderfemme
Response:
Ooooooookaaaaayyy, now I have questions, too! Amelia Yaussy wrote: > All the information I’ve read about localized scleroderma indicates it is extremely unlikely that it will become generalized. This is from WebMD:
Localized Scleroderma Localized scleroderma usually affects only the skin on the hands and face.>> My diagnosis says localized….but…it’s not just on my hands (which never got bad) and I never got more than few dots on my face, and they’re gone, now. I did get the morphea all over my shins,(the worst place) shoulders, chest and an awful lot of my torso, front and back. What the heck!? >> Its course is very slow and it rarely, if ever, becomes systemic or causes severe complications. There are two primary forms of localized scleroderma: > morphea and linear scleroderma. > Morphea Scleroderma. In morphea scleroderma patches of hard skin form and can persist for up to years. Eventually, however, they may improve or even disappear.>>
Neither the doc nor I are ever gonna know if it has stabilized, due to the pencylamine and in most place disappeared, or if the morphea has just run it’s course. Jo NJ
Response:
Hello LJL, It is quite possible to have a combination of Linear/Morphea SD. At least that’s what I was diagnosed with 5 years ago. It is all skin involvement and rarely if ever goes internal. I was covered with plaques of varying shades of brown to yellow and red, had bands of hard tight skin around my middle, around my neck, around my legs, up and down and under my arms. My face is involved only around my lips and a few tiny red spots. I think the disease runs a course of itching, burning, hardening, and discomfort but I am happy to report that all the aforementioned symptoms have disappeared except for the wrinkles around my mouth and I am left with extremely sensitive skin and just have to watch what I wear and sometimes what I eat. After researching this type of SD I am almost certain that it will get no worse, however that remains to be seen. I did take a series of multiple PUVA treatments and I do take antibiotics pills (minocycline) three times a week 100 mg. One of the mysterious aspects of this disease of course, is the fact that no two cases are alike. I do believe strongly that stress plays a major role in this rare malady. B. R.
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