Question:
Barbara, Thank you for responding to my post! I have some questions below. – Hide quoted text — Show quoted text —— Original Message —– From: "Barbara Reutercrona" <bah…@techline.com> Newsgroups: alt.support.scleroderma Sent: Sunday, April 11, 2004 1:40 PM Subject: Re: hello? > Hello Henk, > Have you had a skin biopsy done to determine whether you do have morphea? A > dermatologist can do this for you during an office visit and have results > back in a matter of days. I have two dark oval patches. One on the left side of my neck and the other on the lower-left area of my back. Both areas have been biopsised but the results are that I didn’t not have scleroderma. From what I have been experiencing, and comparisons to photos of people that have localized schleroderma I believe I do have Morphea. > This method was used to diagnose my localized SD > and I did have success in eliminating many of the discolored patches with a > long series of PUVA treatments. As soon as you have a definitive diagnosis > you can begin researching methods of treatments. Does your skin pigmentation looking 100% normal now? Patches are totally gone? I am having a very hard time getting diagnosed but it looks like the treatment witht he PUVA will not hurt if I try it. How long did it take before you saw and improvemets? Do you have any photos that I can take a look at? How long did you have your plaques before you had treatments? Do you have any idea what has caused this? Did you have any type of surgeries? > In case you want to read up > on PUVA here are a couple of links. If you have any questions you would like > to ask me, feel free!! > http://www.dermnetnz.org/index.html > http://www.skinsite.com/info_puva_phototherapy.htm > Regards, Bobbie R. Thanks for those links! Is it okay if I emails you with questions in the further? 
Thank you! -Henk
Response:
Barbara! Do you receive mail at bah…@techline.com? I tried to email you earlier but was it bounced. "Barbara Reutercrona" <bah…@techline.com> wrote in message
news:109bgjdqjtpk9c6@corp.supernews.com… > Henk, > When the results of the biopsies determined you did not have Morphea, were > you given any diagnoses at all? I am a little confused.
No diagnoses at all! The results came back saying no apparent signs of scleroderma, leprosy, or fungi. But there is a comment that it could be related to an autoimmune disease. I’ve had blood work done to test for just about everything including HIV and everything looks normal. Most of the doctors I have seen have no idea what is going on with my skin. They just tell me sorry and say it isn’t that bad! I went to a dermatology conference where I was one of several patients that were examined by about 100 doctors. About 10 of them right off the bat told me that I had morphea. The others had no idea what to think. All the doctors met up that evening and discussed all the cases they saw. I was then called by one of the nurses and she said that nothing could be done and that I should just live with it. I have seen photographs of people that have these dark plaques on their neck and trucks that have been diagnosed as having morphea! These photos look exactly like the marks on my body! Same shape, same color, you get the idea. The area on my lower seems to follow the text book case of Morphea. When I read the medical description of how the marks look, it is how mine looks. It seems that I have a mild case of this and possibly the person examining the biopsy is looking for something different. There seems to be so many variations that I don’t feel confident from the results that I don’t have morphea. >What other symptoms > beside the dark patches do you have? The onset of my Localized SD was > accompanied by extreme itchiness from the top of my head to the bottom of my > feet, spots that varied in size from a quarter to the size of a plate, > colors that went from yellows, reds, blues, to brown.
The fist sized bruise looking mark on the side of my neck feels tight and itchy. Some days it is not at bad as others. The one on my lower back is very smooth and looks to be lower that the normal skin. (looks to be sunken). I now have a hard lump in this dark area and I went to see a dermatologist at Kaiser. I am using a topical steroid on my neck and on my back. Flucinonide Cream USP, 0.05% on my back. Desonide Cream 0.05% on my neck. I am using this for 4 weeks twice a day. I made a deal with the doctor that he would refer me to a rheumatologist when I return. I am not sure if this is a good move but I am trying to find someone who has actually seen morphea before. All the doctors I have seen don’t seem familiar with it. I have had this condition for about 4 years now and it seems about the same. I now have health insurance so I am ready to find a solution for this. > Much of my skin turned > hard from my neck to below my knees.Every piece of clothing irritated me > except soft cotton turned inside out so the seams did not rub against me. I > am not by any means trying to upset you as no two cases of SD are the same > as I am sure you know. Before I go any further, let me put your mind at ease > by telling you that after the first few years, my skin returned to 80% > normal.
This was after the PUVA treatments? Again I have had this for 4 years now and no significant changes. > All of the hardness is gone and I just have a few discolored areas > that are not noticeable to anyone but me. I have read this happens in most > cases of adult onset Localized SD. Whether it was the PUVA treatments or the > disease running its course, I cannot say. I took treatments for a couple of > years, twice a week for months at a time.(I happen to have wonderful medical > coverage, thank goodness!) It has been seven years now since I was first > diagnosed and most of my symptoms are gone.
Wow! That is great! I am happy for you! Does you skin look aged after the PUVA treatments? You took the medication along with the light treatment? And also did you have to wear those sunglasses that wrap around your head? I now have health insurance with Kaiser. How do I go about having photo therapy performed? Did you just see a dermatologist for this or are their specialists? > I never took any photos, I’m sorry to say. As for knowing what causes this > fickle disease, even the experts do not know yet, but they are working on > it, you can be sure. > Prior to the onset of the disease, I had one major surgery six years > earlier. Do you think there is a correlation?
It seems that most of the people I have talked to have had some type of surgery or trauma to a particular area of their body. What type of surgery did you have if you don’t mind me asking? > Yes, I would be more than happy to answer any of your emails. But know, I am > in not an expert by any stretch of the imagination. I am just as confused > about SD as most others that have it can attest to. > Warm regards, Bobbie R.
Thanks for your time Bobbie! I appreciate it deeply! -Henk
Response:
Nell, Thank you very much for your response. I am going to be going back to see the dermatologist next week and I want to ask for a referral to a rheumatologist. What reasoning should I give the doctor to make him want to do the referral? Why the experience with Lupus?! Thank you very much for your advice. -Henk "Nell" <mildredskidnospam_at…@comcast.net> wrote in message
news:npc3a05epvrcneh4hgnk0ab9aiu2oecubh@4ax.com… – Hide quoted text — Show quoted text -> On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" > <sd_downt…@sbcglobal.net> wrote: > <snip>>The one on my lower back is very smooth and looks to be lower > that the > >normal skin. (looks to be sunken). I now have a hard lump in this dark area > >and I went to see a dermatologist at Kaiser. I am using a topical steroid on > >my neck and on my back. > >Flucinonide Cream USP, 0.05% on my back. > >Desonide Cream 0.05% on my neck. > >I am using this for 4 weeks twice a day. I made a deal with the doctor that > >he would refer me to a rheumatologist when I return. I am not sure if this > >is a good move but I am trying to find someone who has actually seen morphea > >before. All the doctors I have seen don’t seem familiar with it. > </snip> > >-Henk > Henk, your best bet is a rheumatologist; even better would be one with > at least some experience with lupus or scleroderma. > My best wishes to you. > Nell
Response:
Neil! Thanks for the info! I am going to schedule an appointment with a rhemuatologist and I’ll report back! Thanks! -Henk "Nell" <mildredskidnospam_at…@comcast.net> wrote in message
news:t1m2c0li52pbooogb031uiasd8d30eo65r@4ax.com… – Hide quoted text — Show quoted text -> On Thu, 27 May 2004 06:35:23 GMT, "HENK VISSER" > <sd_downt…@sbcglobal.net> wrote: > >Neil! Thanks for getting back to me! Don’t worry about the response time! > >Do you have any type of skin discoloration? Dark oval patches? Are you > >treating these? If so how so? PUVA? > >-Henk > No oval patches but one nurse (in the Midwest; I grew up on the West > Coast <USA>) remarked my complexion but, then, I was called "French > Fry" as a kid and I hadn’t noticed any difference. My skin is actually > lighter than it was when I was growing up because I moved to regions > that have actual seasons (presently in the Northeast). I do have tiny > _light_ patches but I scar easily and they show and the patches were > probably from IVs. I only have them on my forearms though come to > think of it I have some "freckling" that I didn’t have years ago. I’ll > bring it up when I go to my rheumy on Monday. Find out if it’s age > (I’m only in my mid-50s), exposure to sun as a kid, or > scleroderma/lupus. > Hmm, made me look. > Nell
Response:
Anyone out there?
Response:
Neil! Thanks for getting back to me! Don’t worry about the response time! Do you have any type of skin discoloration? Dark oval patches? Are you treating these? If so how so? PUVA? -Henk "Nell" <mildredskidnospam_at…@comcast.net> wrote in message
news:sig5b012sb4u8pia681jf52rsvudm0n7k9@4ax.com… – Hide quoted text — Show quoted text -> Henk, > The reason for the experience is that they’ll know what they’re > looking at and be able to ask you the right questions as to get the > best response from you and thus set you on the right track as to > diagnoses and treatment. > I have scleroderma with features of lupus, which is why I mentioned > lupus. > Hope that helps. > Sorry for my slow response. > Nell > On Wed, 19 May 2004 06:26:00 GMT, "HENK VISSER" > <sd_downt…@sbcglobal.net> wrote: > >Nell, > >Thank you very much for your response. > >I am going to be going back to see the dermatologist next week and I want to > >ask for a referral to a rheumatologist. What reasoning should I give the > >doctor to make him want to do the referral? Why the experience with Lupus?! > >Thank you very much for your advice. > >-Henk > >"Nell" <mildredskidnospam_at…@comcast.net> wrote in message > >news:npc3a05epvrcneh4hgnk0ab9aiu2oecubh@4ax.com… > >> On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" > >> <sd_downt…@sbcglobal.net> wrote: > >> <snip>>The one on my lower back is very smooth and looks to be lower > >> that the > >> >normal skin. (looks to be sunken). I now have a hard lump in this dark > >area > >> >and I went to see a dermatologist at Kaiser. I am using a topical steroid > >on > >> >my neck and on my back. > >> >Flucinonide Cream USP, 0.05% on my back. > >> >Desonide Cream 0.05% on my neck. > >> >I am using this for 4 weeks twice a day. I made a deal with the doctor > >that > >> >he would refer me to a rheumatologist when I return. I am not sure if > >this > >> >is a good move but I am trying to find someone who has actually seen > >morphea > >> >before. All the doctors I have seen don’t seem familiar with it. > >> </snip> > >> >-Henk > >> Henk, your best bet is a rheumatologist; even better would be one with > >> at least some experience with lupus or scleroderma. > >> My best wishes to you. > >> Nell
Response:
Hello Henk, Have you had a skin biopsy done to determine whether you do have morphea? A dermatologist can do this for you during an office visit and have results back in a matter of days. This method was used to diagnose my localized SD and I did have success in eliminating many of the discolored patches with a long series of PUVA treatments. As soon as you have a definitive diagnosis you can begin researching methods of treatments. In case you want to read up on PUVA here are a couple of links. If you have any questions you would like to ask me, feel free!! http://www.dermnetnz.org/index.html http://www.skinsite.com/info_puva_phototherapy.htm Regards, Bobbie R.
Response:
On Thu, 27 May 2004 06:35:23 GMT, "HENK VISSER" <sd_downt…@sbcglobal.net> wrote: >Neil! Thanks for getting back to me! Don’t worry about the response time! >Do you have any type of skin discoloration? Dark oval patches? Are you >treating these? If so how so? PUVA? >-Henk
No oval patches but one nurse (in the Midwest; I grew up on the West Coast <USA>) remarked my complexion but, then, I was called "French Fry" as a kid and I hadn’t noticed any difference. My skin is actually lighter than it was when I was growing up because I moved to regions that have actual seasons (presently in the Northeast). I do have tiny _light_ patches but I scar easily and they show and the patches were probably from IVs. I only have them on my forearms though come to think of it I have some "freckling" that I didn’t have years ago. I’ll bring it up when I go to my rheumy on Monday. Find out if it’s age (I’m only in my mid-50s), exposure to sun as a kid, or scleroderma/lupus. Hmm, made me look. Nell
Response:
Henk, The reason for the experience is that they’ll know what they’re looking at and be able to ask you the right questions as to get the best response from you and thus set you on the right track as to diagnoses and treatment. I have scleroderma with features of lupus, which is why I mentioned lupus. Hope that helps. Sorry for my slow response. Nell On Wed, 19 May 2004 06:26:00 GMT, "HENK VISSER" – Hide quoted text — Show quoted text -<sd_downt…@sbcglobal.net> wrote: >Nell, >Thank you very much for your response. >I am going to be going back to see the dermatologist next week and I want to >ask for a referral to a rheumatologist. What reasoning should I give the >doctor to make him want to do the referral? Why the experience with Lupus?! >Thank you very much for your advice. >-Henk >"Nell" <mildredskidnospam_at…@comcast.net> wrote in message >news:npc3a05epvrcneh4hgnk0ab9aiu2oecubh@4ax.com… >> On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" >> <sd_downt…@sbcglobal.net> wrote: >> <snip>>The one on my lower back is very smooth and looks to be lower >> that the >> >normal skin. (looks to be sunken). I now have a hard lump in this dark >area >> >and I went to see a dermatologist at Kaiser. I am using a topical steroid >on >> >my neck and on my back. >> >Flucinonide Cream USP, 0.05% on my back. >> >Desonide Cream 0.05% on my neck. >> >I am using this for 4 weeks twice a day. I made a deal with the doctor >that >> >he would refer me to a rheumatologist when I return. I am not sure if >this >> >is a good move but I am trying to find someone who has actually seen >morphea >> >before. All the doctors I have seen don’t seem familiar with it. >> </snip> >> >-Henk >> Henk, your best bet is a rheumatologist; even better would be one with >> at least some experience with lupus or scleroderma. >> My best wishes to you. >> Nell
Response:
This article has some treatments listed, but it’s dependent on a good diagnosis. http://www.emedicine.com/med/topic3132.htm#section~treatment Are you near a major university medical center? You’re more likely to find a doc there who is familiar with scleroderma. HENK VISSER wrote:
Are there any treatments available to improve the dark oval patches of dark skin I have on my neck and lower back? From my research I believe I have morphea but I am having an incredible time getting diagnosed. Thanks for any advice. -H – Hide quoted text — Show quoted text -HENK VISSER wrote: >Anyone out there?
Response:
Henk, When the results of the biopsies determined you did not have Morphea, were you given any diagnoses at all? I am a little confused. What other symptoms beside the dark patches do you have? The onset of my Localized SD was accompanied by extreme itchiness from the top of my head to the bottom of my feet, spots that varied in size from a quarter to the size of a plate, colors that went from yellows, reds, blues, to brown. Much of my skin turned hard from my neck to below my knees.Every piece of clothing irritated me except soft cotton turned inside out so the seams did not rub against me. I am not by any means trying to upset you as no two cases of SD are the same as I am sure you know. Before I go any further, let me put your mind at ease by telling you that after the first few years, my skin returned to 80% normal. All of the hardness is gone and I just have a few discolored areas that are not noticeable to anyone but me. I have read this happens in most cases of adult onset Localized SD. Whether it was the PUVA treatments or the disease running its course, I cannot say. I took treatments for a couple of years, twice a week for months at a time.(I happen to have wonderful medical coverage, thank goodness!) It has been seven years now since I was first diagnosed and most of my symptoms are gone. I never took any photos, I’m sorry to say. As for knowing what causes this fickle disease, even the experts do not know yet, but they are working on it, you can be sure. Prior to the onset of the disease, I had one major surgery six years earlier. Do you think there is a correlation? Yes, I would be more than happy to answer any of your emails. But know, I am in not an expert by any stretch of the imagination. I am just as confused about SD as most others that have it can attest to. Warm regards, Bobbie R.
Response:
On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" <sd_downt…@sbcglobal.net> wrote:
<snip>>The one on my lower back is very smooth and looks to be lower that the – Hide quoted text — Show quoted text ->normal skin. (looks to be sunken). I now have a hard lump in this dark area >and I went to see a dermatologist at Kaiser. I am using a topical steroid on >my neck and on my back. >Flucinonide Cream USP, 0.05% on my back. >Desonide Cream 0.05% on my neck. >I am using this for 4 weeks twice a day. I made a deal with the doctor that >he would refer me to a rheumatologist when I return. I am not sure if this >is a good move but I am trying to find someone who has actually seen morphea >before. All the doctors I have seen don’t seem familiar with it. </snip> >-Henk
Henk, your best bet is a rheumatologist; even better would be one with at least some experience with lupus or scleroderma. My best wishes to you. Nell
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