Question:

Granted, but a nurse’s visit isn’t a replacement for a doctor’s appointment. – Hide quoted text — Show quoted text -Robert DeSavage wrote: >On Thu, 15 Apr 2004 12:52:42 -0400, "metoo" <liy…@nac.net> wrote: >>What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s >>office!!! >>Shame on Medicaid! They really stink! >>jo >>nj >>"Amelia Yaussy" <am…@blackmule.com> wrote in message >>news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… >>>"For Dorothy Graves, every day is a battle. For the past two years, the >>>Lady’s Island resident has fought the effects of scleroderma, a chronic >>>connective-tissue disease that has caused the hardening of her skin and >>>internal organs." >>>http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html >Perhaps a nurse as opposed to a doctor is a better deal. Not only to >Medicaid, but to the patient as well. >- >In GOD We Trust

Response:

A nurse practicioner would have been a slightly different story. At least then she would have had an almost doctor. Still wouldn’t take the place but still. . . . Poor woman. Nell On Fri, 16 Apr 2004 10:06:30 -0400, Amelia Yaussy – Hide quoted text — Show quoted text -<am…@blackmule.com> wrote: >Granted, but a nurse’s visit isn’t a replacement for a doctor’s appointment. >Robert DeSavage wrote: >>On Thu, 15 Apr 2004 12:52:42 -0400, "metoo" <liy…@nac.net> wrote: >>>What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s >>>office!!! >>>Shame on Medicaid! They really stink! >>>jo >>>nj >>>"Amelia Yaussy" <am…@blackmule.com> wrote in message >>>news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… >>>>"For Dorothy Graves, every day is a battle. For the past two years, the >>>>Lady’s Island resident has fought the effects of scleroderma, a chronic >>>>connective-tissue disease that has caused the hardening of her skin and >>>>internal organs." >>>>http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html >>Perhaps a nurse as opposed to a doctor is a better deal. Not only to >>Medicaid, but to the patient as well. >>- >>In GOD We Trust

Response:

What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s office!!! Shame on Medicaid! They really stink! jo nj "Amelia Yaussy" <am…@blackmule.com> wrote in message

news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… – Hide quoted text — Show quoted text -> "For Dorothy Graves, every day is a battle. For the past two years, the > Lady’s Island resident has fought the effects of scleroderma, a chronic > connective-tissue disease that has caused the hardening of her skin and > internal organs." > http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html

Response:

"For Dorothy Graves, every day is a battle. For the past two years, the Lady’s Island resident has fought the effects of scleroderma, a chronic connective-tissue disease that has caused the hardening of her skin and internal organs." http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html

Response:

On Thu, 15 Apr 2004 12:52:42 -0400, "metoo" <liy…@nac.net> wrote: >What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s >office!!! >Shame on Medicaid! They really stink! >jo >nj >"Amelia Yaussy" <am…@blackmule.com> wrote in message >news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… >> "For Dorothy Graves, every day is a battle. For the past two years, the >> Lady’s Island resident has fought the effects of scleroderma, a chronic >> connective-tissue disease that has caused the hardening of her skin and >> internal organs." >> http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html

Perhaps a nurse as opposed to a doctor is a better deal. Not only to Medicaid, but to the patient as well. – In GOD We Trust

Response:

Question:

Welcome to the Newsgroup. I also have Scleroderma with a various of different problems. I have never been on antibiotic therapy, but last December I had pneumonia and previous to that my lung function tests and other things were all out whack. Needless to say I was admitted to the hospital for the pneumonia and was given antibiotic for it. To make a long story short. In March was my appt. with my doctor who takes care of my Scleroderma-he was amazed everything had changed dramatically for the better-he asked what I had been doing and the only thing that I was doing differently was taking antibiotics to get rid of the pneumonia, and I really believed that is what did it, even though it wasn’t the one you are referring to. My next appointment with him is just around the corner. The first time since dx that I have had a 6 month appt. Doris "Montag" <armad…@polbox.com> wrote in message

news:d9e99f21.0308272303.20a2b872@posting.google.com… – Hide quoted text — Show quoted text -> Was recently told I probably have CREST. > Anyone have any experiences good or bad with antibiotic therapy? > Thank you! > John

Response:

Thanks for the all the info.  This is a scary experience and there is a lot to take in at once. Amelia Yaussy <ayau…@forcemail.com> wrote in message <news:opadnUK83YMnkdOiU-KYgw@wideopenwest.com>… > Hi John!  I have diffuse and paralelled a study Dr Mayes was doing on > minocycline (wasn’t in the study but took the same dosages.)  

 How did your doc diagnose Limited (CREST)? I have had Raynauds for several years but more recently have developed joint pain/stiffness, subjective fever, fatigue, petechiae under tongue and esophageal and abdominal symptoms.  My internal medicine doctor indicated that I met the criteria for CREST.  I am waiting to see a rheumatologist.  In the interim I am trying to learn all I can to see what kind of difference I can make with diet/lifestyle and what choice of therapies I may have. Thanks again! John – Hide quoted text — Show quoted text -> Montag wrote: > > Was recently told I probably have CREST. > > Anyone have any experiences good or bad with antibiotic therapy? > > Thank you! > > John

Response:

Hi John!  I have diffuse and paralelled a study Dr Mayes was doing on minocycline (wasn’t in the study but took the same dosages.)  It cleared up acne and may have cleared up some gut problems but after a year I had to say it didn’t do anything for my scleroderma.  Not much study has been done on minocycline for scleroderma, but it did prove to be a mild anti-inflammatory in a rather large test for rheumatoid arthritis. How did your doc diagnose Limited (CREST)? If you’re in the US, call the Scleroderma Foundation at 1-800-722-HOPE or visit www.scleroderma.org to get a free info packet mailed to you. Of course, they’ll send their membership info, but they’ll also send some of their great brochures and booklets, and a copy of the Scleroderma Voice, the quarterly magazine they produce, and it has a LOT of info. – Hide quoted text — Show quoted text -Montag wrote: > Was recently told I probably have CREST. > Anyone have any experiences good or bad with antibiotic therapy? > Thank you! > John

Response:

Was recently told I probably have CREST. Anyone have any experiences good or bad with antibiotic therapy? Thank you! John

Response:

I think it’s a particularly interesting phenomena in scleroderma that, even when presented study evidence that certain medications aren’t significantly more effective than placebo (methotrexate – http://makeashorterlink.com/?N31912623) or large dose vs small dose (D-penicillamine – http://makeashorterlink.com/?I287633C5) that these drugs remain standard treatment.  I don’t doubt that people will continue to find antibiotic therapy helpful even if it is shown to make an insignificant difference in studies.  So far, there’s not much evidence pro or con – http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=PubMed

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Question:

Annie, you made my day.  That’s EXACTLY how this was all supposed to work when we all started on it several years ago – one site to another, a big ol’ SD Net!  Yay! Apple Annie wrote in message

<19991001145618.22452.00000…@ng-cr1.aol.com>… snipped – Hide quoted text — Show quoted text ->I found Sherry’s FANTASTIC site and joined the digest and I am just in awe of >the work she does and in even more awe of the compassion and amount of >information that is shared through this mailing list. I strongly urge people to >contact Sherry about joining this list. >From Sherry’s site I found the scleroderma foundation and paid my dues. >I found Shelley’s site from the search engines and from her site found the >SDWorld. I won’t go over my perceptions of the dot org again. I’m sure that >pleases many here. >Through Sherry’s site I found Amie’s site and have sat for hours reading >stories. Through Amie’s site I found this newsgroup and began reading.

Response:

>I dont use "cuss" words only colorful metaphors

They are cuss words from my side of the tracks. All jokes aside Colleen I  realize you meant well in your actions. I just think you need to re-think getting involved in personal battles that take place. Newsgroups conversations cannot be reined in by anyone. People that post have to be allowed to share their personality traits and they will share them whether allowed or not. You nor I may agree with them but in order for a group to flourish and grow it must take place. I realize that conflict can cause some people to be unresponsive but without conflicts we wouldn’t learn many things about other people and sites online to help guide us about what is right and what is wrong to get involved in. Many times these conflicts show us the truth about a person or a site. I hope that you and I can symbolically shake hands and continue to communicate here in the newsgroup. Now a little about me. I have been a part of the online community and the arthritis newsgroup for some time. I have had rheumatoid arthritis for a long time. I was only recently diagnosed with MS and then only 24 hours later after seeing a rheumatologist was told I additionally have scleroderma. At this time they are uncertain of its form. This is what brought me first to the internet in search of information about scleroderma. I found Sherry’s FANTASTIC site and joined the digest and I am just in awe of the work she does and in even more awe of the compassion and amount of information that is shared through this mailing list. I strongly urge people to contact Sherry about joining this list. From Sherry’s site I found the scleroderma foundation and paid my dues. I found Shelley’s site from the search engines and from her site found the SDWorld. I won’t go over my perceptions of the dot org again. I’m sure that pleases many here. Through Sherry’s site I found Amie’s site and have sat for hours reading stories. Through Amie’s site I found this newsgroup and began reading. So here I am. I think you all can fill in the remaining history. Smiles Apple Annie ***To reply remove "nospam" from my address***

Response:

I dont use "cuss" words only colorful metaphors – Hide quoted text — Show quoted text -Sir Laffsalot wrote: > Bwaahahahahah! That’s a heart! Is that a heart? Yes, Most absofrikkin-lootlee, > that’s a heart! Oh, gimme that JAR, I have some shtuffing to do! I’ll be set for 40 > days and 40 nights! Waaaaaaahhhhhaaaaaa! > Apple Annie wrote: > > > I can take the heat and yes I was trying to diffuse the situation. > > >MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE. > > That is hard to do. It is hard not to respond when someone is being a nasty > > person publically. Especially when it is trying to be insinuated that it is > > your fault. > > >No Annie, I am not naive by any means, I give people the benefit of the > > >doubt instead of jumping to conclusions first. Shelley did go off in > > >some other field. And if you read my messages right, I stated you were > > >not at fault. > > I did read you say that to me. But Jaimes did not deserve what you said to her. > > >As far as my usage of American slang…I call a spade a spade and there > > >is no other word for it. > > There are words to describe a spade that are not considered cuss words. Besides > > Jaimes is not the SPADE here. > > I think it is obvious that Shelley Ensz has no intention to make this right so > > I am taking her off my christmas list. If she rears her head and I think she is > > not being on the up and up you can bet your bloomers I’ll respond. > > Smiles > > Apple Annie > > ***To reply remove "nospam" from my address***

Response:

Colleen, I greatly appreciate your effort at "diffusing" the situation, but this is not a "moderated board" and the discussion going on here is perfectly within the traditions and uses of newsgroups, and especially of alt.* newsgroups.  I suggest that if you prefer not to engage in this lengthy and somewhat heated discussion that you avoid the threads containing it.  I am adopting this same plan myself. May I ask that those who are resolved to continue their debate be specific about their subject lines?  Those of us unwilling to engage in this debate will gladly steer around you in search of something else. – Hide quoted text — Show quoted text -Richard Schiehl wrote in message <37F3BE34.80262…@gulftel.com>… > I can take the heat and yes I was trying to diffuse the situation. >MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE. >No Annie, I am not naive by any means, I give people the benefit of the >doubt instead of jumping to conclusions first. Shelley did go off in >some other field. And if you read my messages right, I stated you were >not at fault. >As far as my usage of American slang…I call a spade a spade and there >is no other word for it. >Susan/Sherry/Jaimes your e-mails came through, thanks.

Response:

 I can take the heat and yes I was trying to diffuse the situation. MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE. No Annie, I am not naive by any means, I give people the benefit of the doubt instead of jumping to conclusions first. Shelley did go off in some other field. And if you read my messages right, I stated you were not at fault. As far as my usage of American slang…I call a spade a spade and there is no other word for it. Susan/Sherry/Jaimes your e-mails came through, thanks.

Response:

Bwaahahahahah! That’s a heart! Is that a heart? Yes, Most absofrikkin-lootlee, that’s a heart! Oh, gimme that JAR, I have some shtuffing to do! I’ll be set for 40 days and 40 nights! Waaaaaaahhhhhaaaaaa! – Hide quoted text — Show quoted text -Apple Annie wrote: > > I can take the heat and yes I was trying to diffuse the situation. > >MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE. > That is hard to do. It is hard not to respond when someone is being a nasty > person publically. Especially when it is trying to be insinuated that it is > your fault. > >No Annie, I am not naive by any means, I give people the benefit of the > >doubt instead of jumping to conclusions first. Shelley did go off in > >some other field. And if you read my messages right, I stated you were > >not at fault. > I did read you say that to me. But Jaimes did not deserve what you said to her. > >As far as my usage of American slang…I call a spade a spade and there > >is no other word for it. > There are words to describe a spade that are not considered cuss words. Besides > Jaimes is not the SPADE here. > I think it is obvious that Shelley Ensz has no intention to make this right so > I am taking her off my christmas list. If she rears her head and I think she is > not being on the up and up you can bet your bloomers I’ll respond. > Smiles > Apple Annie > ***To reply remove "nospam" from my address***

Response:

>Annie, you made my day.  That’s EXACTLY how this was all supposed to work >when we all started on it several years ago – one site to another, a big ol’ >SD Net!  Yay!

Thank you Amie. I really can feel the network at play in yours, Sherry’s and most of the sites online. The key to providing support is for everyone to work together. Smiles Apple Annie ***To reply remove "nospam" from my address***

Response:

Advice taken and appreciated. – Hide quoted text — Show quoted text -Amelia Black Yaussy wrote: > Colleen, I greatly appreciate your effort at "diffusing" the situation, but > this is not a "moderated board" and the discussion going on here is > perfectly within the traditions and uses of newsgroups, and especially of > alt.* newsgroups.  I suggest that if you prefer not to engage in this > lengthy and somewhat heated discussion that you avoid the threads containing > it.  I am adopting this same plan myself. > May I ask that those who are resolved to continue their debate be specific > about their subject lines?  Those of us unwilling to engage in this debate > will gladly steer around you in search of something else. > Richard Schiehl wrote in message <37F3BE34.80262…@gulftel.com>… > > I can take the heat and yes I was trying to diffuse the situation. > >MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE. > >No Annie, I am not naive by any means, I give people the benefit of the > >doubt instead of jumping to conclusions first. Shelley did go off in > >some other field. And if you read my messages right, I stated you were > >not at fault. > >As far as my usage of American slang…I call a spade a spade and there > >is no other word for it. > >Susan/Sherry/Jaimes your e-mails came through, thanks.

Response:

I though I had it to a T This love affair with words, you see I must adjust my pinafore And speak no more in metaphor This was meant for Annie, right? ‘Cuz when I cus, I just say, "shite!" – Hide quoted text — Show quoted text -Richard Schiehl wrote: > I dont use "cuss" words only colorful metaphors > Sir Laffsalot wrote: > > Bwaahahahahah! That’s a heart! Is that a heart? Yes, Most absofrikkin-lootlee, > > that’s a heart! Oh, gimme that JAR, I have some shtuffing to do! I’ll be set for 40 > > days and 40 nights! Waaaaaaahhhhhaaaaaa! > > Apple Annie wrote: > > > > I can take the heat and yes I was trying to diffuse the situation. > > > >MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE. > > > That is hard to do. It is hard not to respond when someone is being a nasty > > > person publically. Especially when it is trying to be insinuated that it is > > > your fault. > > > >No Annie, I am not naive by any means, I give people the benefit of the > > > >doubt instead of jumping to conclusions first. Shelley did go off in > > > >some other field. And if you read my messages right, I stated you were > > > >not at fault. > > > I did read you say that to me. But Jaimes did not deserve what you said to her. > > > >As far as my usage of American slang…I call a spade a spade and there > > > >is no other word for it. > > > There are words to describe a spade that are not considered cuss words. Besides > > > Jaimes is not the SPADE here. > > > I think it is obvious that Shelley Ensz has no intention to make this right so > > > I am taking her off my christmas list. If she rears her head and I think she is > > > not being on the up and up you can bet your bloomers I’ll respond. > > > Smiles > > > Apple Annie > > > ***To reply remove "nospam" from my address***

Response:

> I can take the heat and yes I was trying to diffuse the situation. >MY POINT IS IF ANYONE NEEDS TO CONTINUE THIS DO SO ELSEWHERE.

That is hard to do. It is hard not to respond when someone is being a nasty person publically. Especially when it is trying to be insinuated that it is your fault. >No Annie, I am not naive by any means, I give people the benefit of the >doubt instead of jumping to conclusions first. Shelley did go off in >some other field. And if you read my messages right, I stated you were >not at fault.

I did read you say that to me. But Jaimes did not deserve what you said to her. >As far as my usage of American slang…I call a spade a spade and there >is no other word for it.

There are words to describe a spade that are not considered cuss words. Besides Jaimes is not the SPADE here. I think it is obvious that Shelley Ensz has no intention to make this right so I am taking her off my christmas list. If she rears her head and I think she is not being on the up and up you can bet your bloomers I’ll respond. Smiles Apple Annie ***To reply remove "nospam" from my address***

Response:

Question:

I have read a little about a conference coming up. Is this on sclerodarma or something else? Will there be a lot of people there with the disease or is this a medical conference for physicians?

Response:

The Bluebonnet chapter of the scleroderma foundation are this years host for the conference in Houston. The webmasters of their chapter page Linda and Joe Pecot have created a fabulous page with about everything you could imagine in relation to planning your travels all the way up to what to expect when you get there. A great resource page if you are planning on attending the SF conference in Houston Texas July 30 thru August 1 http://cust2.iamerica.net/jpecot/1998Conference.htm

Response:

Anybody here already got their reservations in? — Amie ——– Kate Nance’s "I Have Scleroderma" website has been updated and moved to http://members.tripod.com/~ayaussy Please visit us!

Response:

In article <35448FBA.7…@dbsx.com>,   ayau…@dbsx.com wrote: > Anybody here already got their reservations in? > — > Amie > ——– > Kate Nance’s "I Have Scleroderma" website has > been updated and moved to > http://members.tripod.com/~ayaussy > Please visit us!

I called in my hotel reservations a month ago and I am getting ready to call national with mine and Joe’s conference reservations.  We decided we would only stay at the hotel on Friday and Saturday as the hotel is only about 20 miles from our house and we can drive in on Thursday and Friday mornings. Linda —–== Posted via Deja News, The Leader in Internet Discussion ==—– http://www.dejanews.com/   Now offering spam-free web-based newsreading

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Question:

Doris wrote in message <1Z7p3.10857$Li1.28817…@news-read1.qis.net>… >Where can I find this newsletter so I can read the article on participation >in testing new drugs etc.

Here’s info from a page about DMSO – all links I could find to a website for SIF were dead: The Scleroderma International Foundation (SIF) needs help to: Reach out to people isolated with scleroderma Develop education/support groups Raise funds to promote new research efforts Increase public awareness of scleroderma Strengthen physician training to further prompt diagnosis and improve therapy Support The Connector, the newsletter of the Scleroderma International Foundation, which is issued quarterly with updated material concerning research and treatment. The efforts to eradicate major diseases like scleroderma have always been financed by patients, their families and a concerned public. To achieve our goals, we need your support. You can help to conquer scleroderma. Fund-raising is very important to the Scleroderma International Foundation. And your generous donation is, of course, tax deductible. If you are interested in helping, please get in touch with us at: Dr. Stanley Jacob (503)494-8474

Response:

Where can I find this newsletter so I can read the article on participation in testing new drugs etc. I have been in several clinical trials? Doris

Response:

Thanks User 115827 for the information?

Response:

Where can I find this newsletter so I can read the article on participation >in testing new drugs etc.

The International Foundation is at 704 Gardner Center Road, New Castle, Pennsylavania  16101. It has raised a lot for research and was set up by Arkie Barlet, a scleroderma patient, who died recently. I like their newsletter. Nancy

Response:

I used to get the connector from the SIF. I have a friend who used DMSO. She is really doing well now, thanks to Dr. Jacob. I am sorry to hear that Arkie Bartlet died. since I haven’t received the newsletter in a long time I wasn’t aware of it. <<From: user1158 >> << The International Foundation is at 704 Gardner Center Road, New Castle, Pennsylavania  16101. It has raised a lot for research and was set up by Arkie Barlet, a scleroderma patient, who died recently. I like their newsletter. Nancy >> I used to like their newsletter too. Thanks …..love Gigi

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Question:

I read that it will cut inflammation, but I don’t have the site.’ Linda

Response:

Hello, I am investigating some treatments for a family friend. I came across one article that mentioned the use of bromelain to treat scleroderma.  I would like to know if anyone can point me to articles or research on the use of bromelain for treating scleroderma. Sincerely, Jerome, in Red Bank, NJ, US ~~~~~~~~~~~~~~~~~~~~~~~ Jerome Scriptunas jero…@att.net , www.brisc.org

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Question:

It’s been very quiet since I joined about a month ago. I’ve just been diagnosed with scleroderma (maybe). The RD thinks I should be able to pull up a fold of skin on top of my fingers. I don’t remember ever being able to do that, at least for many years. Anyone else? – Hide quoted text — Show quoted text -GRamos3414 wrote: > This used to be a very busy board but lately noone has been posting where did > everyone go.?Where is Colleen,Soc Jog ? Doris I see messages from once in > awhile. I know Josie doesn’t post anymore but where is everyone else? > How is everyone doing? I am pretty stable and have been for a long time.I miss > seeing messages on this board……..Gigi

Response:

Gigi I am here, but just very quiet! Really don’t have much to say after the Bombshell hit a few days ago, just trying to put everything into perspective and trying to understand-who can I trust! I am doing good in some kind of remission, but I will accept it with open arms and not talk to loudly about it. We escape the snowstorm that was predicted here in Maryland-but the areas North of us like NY, CT and Boston got dumped on. My son who is in the NAVY is in upstate NY can’t wait till he gets home to see if he enjoyed the snow as where he lives in VA very seldom gets any? Take care all and have a good weekend. Doris Amelia Yaussy <ayau…@forcemail.com> wrote in message

news:986hac0bcj@news2.newsguy.com… – Hide quoted text — Show quoted text -> I’ll bet folks are here, just quiet.  I’ve been guilty of that myself – will > be better, promise! > GRamos3414 wrote in message > <20010307172137.10329.00000…@ng-ck1.aol.com>… > >This used to be a very busy board but lately noone has been posting where > did > >everyone go.?Where is Colleen,Soc Jog ? Doris I see messages from once in > >awhile. I know Josie doesn’t post anymore but where is everyone else? > >How is everyone doing? I am pretty stable and have been for a long time.I > miss > >seeing messages on this board……..Gigi

Response:

This used to be a very busy board but lately noone has been posting where did everyone go.?Where is Colleen,Soc Jog ? Doris I see messages from once in awhile. I know Josie doesn’t post anymore but where is everyone else? How is everyone doing? I am pretty stable and have been for a long time.I miss seeing messages on this board……..Gigi

Response:

I’ll bet folks are here, just quiet.  I’ve been guilty of that myself – will be better, promise! GRamos3414 wrote in message

<20010307172137.10329.00000…@ng-ck1.aol.com>… – Hide quoted text — Show quoted text ->This used to be a very busy board but lately noone has been posting where did >everyone go.?Where is Colleen,Soc Jog ? Doris I see messages from once in >awhile. I know Josie doesn’t post anymore but where is everyone else? >How is everyone doing? I am pretty stable and have been for a long time.I miss >seeing messages on this board……..Gigi

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On 07 Mar 2001 22:21:37 GMT, gramos3…@aol.com (GRamos3414) wrote: >This used to be a very busy board but lately noone has been posting where did >everyone go.?Where is Colleen,Soc Jog ? Doris I see messages from once in >awhile. I know Josie doesn’t post anymore but where is everyone else? >How is everyone doing? I am pretty stable and have been for a long time.I miss >seeing messages on this board……..Gigi

Hi Call it the winter blahs. Up here in Massachusetts, I’m seeing the sun for the first time in days. Although we didn’t get a record amount to snow, it was enough to make things miserable. Naturally, because it’s March and the snow removal budget is nearly flat, the streets are a bit more messy than usual. Lost power for a total of two hours last night. It’s a stressful situation because there is no heat and you never know how long the outage is going to last. So far so good now. BOB – "Be yourself as long as you’re exactly like me" – anonymous

Response:

Thanks for writing in I am glad to see that everyone is still there but we can’t all lurk. Glad to see messages from Amie and Bob and also the new person. I guess more people would continue to write if we old timers(in my case both literally and figuratively) would write and answer them………Love Gigi

Response:

Linda, WOW! There is a ton of information on your site. Great links to just about everywhere! Well done! –Jaimes – Hide quoted text — Show quoted text -LindaRTC1 wrote: > I haven’t visited here in a long time. > I built a website about Mixed Connective Tissue Disorder..a form of SD. That > has kept me very busy. > Hope you all are well, > Linda > http://hometown.aol.com//lindartc/index.htm

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Actually, I thought we’ve been posting pretty regularly the past few weeks. We had some interesting threads on workplace-induced scleroderma  with exposure to silica. "Doris" <dreich…@toad.net> wrote in message

news:G1nt6.3659$Og1.314142@news.abs.net… – Hide quoted text — Show quoted text -> We are here, but it seems everyone is only reading and not posting these > days. I bookmarked your site to get back to it when I have more time. We > need another MCTD website out there as there are not many. From just > scanning over it looks every extensive. > Doris > LindaRTC1 <lindar…@aol.comlindatc> wrote in message > news:20010318210924.07174.00001459@ng-mj1.aol.com… > > I haven’t visited here in a long time. > > I built a website about Mixed Connective Tissue Disorder..a form of SD. > That > > has kept me very busy. > > Hope you all are well, > > Linda > > http://hometown.aol.com//lindartc/index.htm

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Gigi, Hello to you. Yes, I know what you mean. Maybe everyone has spring fever and is out planting posies. I am glad to hear you are doing well. I can say the same, thank goodness. Here in the Northwest we are experiencing some fine weather but I did see that the Northeast  has had some awful snowstorms and blizzards. Do you suppose that some have lost electricity? Come on back. I check the newsgroup every day. Bobbie R.

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We are here, but it seems everyone is only reading and not posting these days. I bookmarked your site to get back to it when I have more time. We need another MCTD website out there as there are not many. From just scanning over it looks every extensive. Doris LindaRTC1 <lindar…@aol.comlindatc> wrote in message

news:20010318210924.07174.00001459@ng-mj1.aol.com… – Hide quoted text — Show quoted text -> I haven’t visited here in a long time. > I built a website about Mixed Connective Tissue Disorder..a form of SD. That > has kept me very busy. > Hope you all are well, > Linda > http://hometown.aol.com//lindartc/index.htm

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Yep, I remember being able to pinch skin on my fingers.  Mine’s a little more obnoxious and obvious ’cause I have contractures.  Are your fingers swollen, or do they swell in the AM and PM? – Hide quoted text — Show quoted text -Judy Bay wrote in message <3AA6F290.EA63…@terraworld.net>… >It’s been very quiet since I joined about a month ago. I’ve just been >diagnosed with scleroderma (maybe). The RD thinks I should be able to >pull up a fold of skin on top of my fingers. I don’t remember ever being >able to do that, at least for many years. Anyone else?

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I haven’t visited here in a long time. I built a website about Mixed Connective Tissue Disorder..a form of SD. That has kept me very busy. Hope you all are well, Linda http://hometown.aol.com//lindartc/index.htm

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Yes, my fingers are swollen, sometimes more, sometimes less. That’s what sent me to the doctor in December. Prednisone has eased the swelling & pain considerably, but there’s a lot of stiffness. Mtx, kick in, please! – Hide quoted text — Show quoted text -Amelia Yaussy wrote: > Yep, I remember being able to pinch skin on my fingers.  Mine’s a little > more obnoxious and obvious ’cause I have contractures.  Are your fingers > swollen, or do they swell in the AM and PM? > Judy Bay wrote in message <3AA6F290.EA63…@terraworld.net>… > >It’s been very quiet since I joined about a month ago. I’ve just been > >diagnosed with scleroderma (maybe). The RD thinks I should be able to > >pull up a fold of skin on top of my fingers. I don’t remember ever being > >able to do that, at least for many years. Anyone else?

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Question:

Information I was given after diagnosis by the major SD support groups here in the USA indicated using D-penicillamine and colchicine to slow the binding process of collagen in the skin.  In the short time since I was given that info (2 years) a new study has indicated that this may not be true with D-pen.  Are you currently being treated by a rheumatologist, and if so, what medications are you on?  When you say you are having "collagen production" do you mean your skin is hardening rapidly?  Thanks for bringing this up – hope we can help. Amie

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Hi, i

Question:

In <19970201174400.MAA28…@ladder01.news.aol.com>, kryste…@aol.com (Krystenah) writes: >My mother was diagnosed with CREST a couple of years ago.  She has been >following all of advice of her doctors, (drugs, drugs and more drugs) but >would also like to try some herbal remedies along with the more >traditional western medecine.  A friend of hers, who is into herbals, told

My big sister is having no luck at all with the drugs — they seem to do nothing to help. She is exercising quite a bit, and that seems to help the Raynaud’s. She got a treadmill, and does 1/2 hour 2 or 3 times per day. I’m guessing it raises her blood pressure to the point that the blood starts flowing to fingers and toes again. If nothing else, she certainly is in great shape ! -BOBm – Hide quoted text — Show quoted text ->>My Posts and Opinions are My Own<<

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ayaussy…@aol.com wrote: > "Herbal remedies" are quite powerful drugs and have their own set of side > effects and bad effects, with the added complication of being unregulated > and often perscribed by amateurs who have never studied your specific > disease.  In what way does Gotu Kola slow collagen build-up?  What studies > show this? > Amie Y. > visit the I HAVE SCLERODERMA website – http://www.epix.net/~knance/

I agree with Amie: If you use herbs, use the same common sense and precautions you would use with any drug. An excellent website that discusses an intelligent informed use of medicinal herbs is: http://www.primenet.com/~camilla/herbs I really think anyone interested in taking herbs will enjoy this site. — Kate Nance

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"Herbal remedies" are quite powerful drugs and have their own set of side effects and bad effects, with the added complication of being unregulated and often perscribed by amateurs who have never studied your specific disease.  In what way does Gotu Kola slow collagen build-up?  What studies show this? Amie Y. visit the I HAVE SCLERODERMA website – http://www.epix.net/~knance/

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My mother was diagnosed with CREST a couple of years ago.  She has been following all of advice of her doctors, (drugs, drugs and more drugs) but would also like to try some herbal remedies along with the more traditional western medecine.  A friend of hers, who is into herbals, told her to use Gotu Kola (Centella asiatica) 20mg extract 3 times weekly. This is supposed to slow collagen (sp.?) buildup.  Has anyone ever tried this, and what was the outcome.  Also, does anyone have any other suggestions for her?   You can either leave me a message on this bulletin board, or e-mail me at: Kryste…@aol.com Thanks, Kristina Sellers

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Question:

Does anyone have helpful information on Reynaud’s?  A friend just told me that she has it, and I can’t seem to find any information on what to do about it. Thanks, Dot —  There is more to life than increasing its speed.  - Gandhi

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Does anyone have helpful information on Reynaud’s?  A friend just told me that she has it, and I can’t seem to find any information on what to do about it. Thanks, Dot

Raynaud’s phenomena responds to medications such as Procardia (nifedipine), biofeedback training, and hypnosis.  But because Raynaud’s can be an early sign of a serious rheumatologic or autoimmune disorder (e.g., scleroderma) it is wise to get a thorough medical workup before or in addition to symptomatic approaches of treating this condition. Steve G         In the Warm Arizona-Sonora Desert  Steven Gurgevich, PhD   Behavioral Medicine, Ltd.

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Does anyone have helpful information on Reynaud’s?  A friend just told me that she has it, and I can’t seem to find any information on what to do about it. Thanks, Dot Raynaud’s phenomena responds to medications such as Procardia (nifedipine), biofeedback training, and hypnosis.  But because Raynaud’s can be an early sign of a serious rheumatologic or autoimmune disorder (e.g., scleroderma) it is wise to get a thorough medical workup before or in addition to symptomatic approaches of treating this condition. Steve G

Procardia can also have a multitude of dangerous side effects.  I do agree that a good medical workup is needed.  Reynauds syndrome is also a signal that nerve/bloodvessel "communication" may be decreased . You might also look into Nutritional things ie. Garlic, Ginkgo biloba, Cayenne which help the circulatory system, among other things. Although there is much scientific information on these benefits, you must also realize that long term effects have not been "scientifically established on this, or most alt. therapies for most things, but is DEFINETLY worth looking into.  People have been using this stuff for hundreds, if not thousands of years Take Care Que – Hide quoted text — Show quoted text –        In the Warm Arizona-Sonora Desert Steven Gurgevich, PhD   Behavioral Medicine, Ltd.

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