Re: Recently diagnosed with Scleroderma

[Guest guest]

Hi Rob,

You must have joined while I was gone for awhile. I just want to

welcome you to the group. I don't have Scleroderma, but we all go

through the same thing, living and coping with our disease.

I'm so glad your here, and just know were always here for you.

Hugs, Tawny

> I have sero negative RA as well as crest scleroderma.......although

my

> rheumy wont commit to saying I have RA, my Mom has it and hers was

> negative for 10 years......anyway Im looking to find out more about

> living with the scleroderma , Ive got the tightend skin on my hands

> feet and I think my head.....I also have the hard

> lumps/nodules /calcium deposits on my forarms/elbows and my fore

> head ......the ones on my head are a little bigger and are totally

> symetric along my brow....like Klingon lumps on Star Trek..LOL...I

am

> somewhat young 36 tomorrow and a former skateboarder ...so I have

been

> asked where did I get my implants or told Hey your implants are

> cool.....I just say thanks......anyway if anyone has any info let me

> know

[Guest guest]

Hi Rob,

You must have joined while I was gone for awhile. I just want to

welcome you to the group. I don't have Scleroderma, but we all go

through the same thing, living and coping with our disease.

I'm so glad your here, and just know were always here for you.

Hugs, Tawny

> I have sero negative RA as well as crest scleroderma.......although

my

> rheumy wont commit to saying I have RA, my Mom has it and hers was

> negative for 10 years......anyway Im looking to find out more about

> living with the scleroderma , Ive got the tightend skin on my hands

> feet and I think my head.....I also have the hard

> lumps/nodules /calcium deposits on my forarms/elbows and my fore

> head ......the ones on my head are a little bigger and are totally

> symetric along my brow....like Klingon lumps on Star Trek..LOL...I

am

> somewhat young 36 tomorrow and a former skateboarder ...so I have

been

> asked where did I get my implants or told Hey your implants are

> cool.....I just say thanks......anyway if anyone has any info let me

> know

[Guest guest]

Rob, so sorry to hear that you have scleroderma. I'm assuming that your

rheumatologist thinks you have limited rather than diffuse disease.

" The Scleroderma Book " by Dr. Maureen Mayes is an excellent resource for

patients and their families and the second edition has recently become

available:

http://www.oup.com/us/catalog/general/subject/HealthMindBody/~~/cHI9MTAmcGY9MCZz\

cz1wdWJkYXRlLmRlc2Mmc2Y9bmV3cmVjZW50JnNkPWFzYyZ2aWV3PXVzYSZjaT0wMTk1MTY5NDA5

I don't have it yet, but I do have the first edition, which I think is

first-rate.

International Scleroderma Network:

http://www.sclero.org/

Scleroderma Foundation:

http://www.scleroderma.org/

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Recently diagnosed with Scleroderma

>I have sero negative RA as well as crest scleroderma.......although my

> rheumy wont commit to saying I have RA, my Mom has it and hers was

> negative for 10 years......anyway Im looking to find out more about

> living with the scleroderma , Ive got the tightend skin on my hands

> feet and I think my head.....I also have the hard

> lumps/nodules /calcium deposits on my forarms/elbows and my fore

> head ......the ones on my head are a little bigger and are totally

> symetric along my brow....like Klingon lumps on Star Trek..LOL...I am

> somewhat young 36 tomorrow and a former skateboarder ...so I have been

> asked where did I get my implants or told Hey your implants are

> cool.....I just say thanks......anyway if anyone has any info let me

> know

[Guest guest]

Rob, so sorry to hear that you have scleroderma. I'm assuming that your

rheumatologist thinks you have limited rather than diffuse disease.

" The Scleroderma Book " by Dr. Maureen Mayes is an excellent resource for

patients and their families and the second edition has recently become

available:

http://www.oup.com/us/catalog/general/subject/HealthMindBody/~~/cHI9MTAmcGY9MCZz\

cz1wdWJkYXRlLmRlc2Mmc2Y9bmV3cmVjZW50JnNkPWFzYyZ2aWV3PXVzYSZjaT0wMTk1MTY5NDA5

I don't have it yet, but I do have the first edition, which I think is

first-rate.

International Scleroderma Network:

http://www.sclero.org/

Scleroderma Foundation:

http://www.scleroderma.org/

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Recently diagnosed with Scleroderma

>I have sero negative RA as well as crest scleroderma.......although my

> rheumy wont commit to saying I have RA, my Mom has it and hers was

> negative for 10 years......anyway Im looking to find out more about

> living with the scleroderma , Ive got the tightend skin on my hands

> feet and I think my head.....I also have the hard

> lumps/nodules /calcium deposits on my forarms/elbows and my fore

> head ......the ones on my head are a little bigger and are totally

> symetric along my brow....like Klingon lumps on Star Trek..LOL...I am

> somewhat young 36 tomorrow and a former skateboarder ...so I have been

> asked where did I get my implants or told Hey your implants are

> cool.....I just say thanks......anyway if anyone has any info let me

> know

[Guest guest]

I, too, have scleroderma and do recommend the Dr. Maureen Mayes book. I have

the first edition and find it an excellent resource. Also, the ISN,

International Sclerderma Network, with it's over 1200 pages in 20 languages,

is the very best place to find information. They also have an active message

board.

jude

----- Original Message -----

From:

Rob, so sorry to hear that you have scleroderma. I'm assuming that your

rheumatologist thinks you have limited rather than diffuse disease.

" The Scleroderma Book " by Dr. Maureen Mayes is an excellent resource for

patients and their families and the second edition has recently become

available:

http://www.oup.com/us/catalog/general/subject/HealthMindBody/~~/cHI9MTAmcGY9

MCZzcz1wdWJkYXRlLmRlc2Mmc2Y9bmV3cmVjZW50JnNkPWFzYyZ2aWV3PXVzYSZjaT0wMTk1MTY5

NDA5

I don't have it yet, but I do have the first edition, which I think is

first-rate.

International Scleroderma Network:

http://www.sclero.org/

Scleroderma Foundation:

http://www.scleroderma.org/

[Guest guest]

I, too, have scleroderma and do recommend the Dr. Maureen Mayes book. I have

the first edition and find it an excellent resource. Also, the ISN,

International Sclerderma Network, with it's over 1200 pages in 20 languages,

is the very best place to find information. They also have an active message

board.

jude

----- Original Message -----

From:

Rob, so sorry to hear that you have scleroderma. I'm assuming that your

rheumatologist thinks you have limited rather than diffuse disease.

" The Scleroderma Book " by Dr. Maureen Mayes is an excellent resource for

patients and their families and the second edition has recently become

available:

http://www.oup.com/us/catalog/general/subject/HealthMindBody/~~/cHI9MTAmcGY9

MCZzcz1wdWJkYXRlLmRlc2Mmc2Y9bmV3cmVjZW50JnNkPWFzYyZ2aWV3PXVzYSZjaT0wMTk1MTY5

NDA5

I don't have it yet, but I do have the first edition, which I think is

first-rate.

International Scleroderma Network:

http://www.sclero.org/

Scleroderma Foundation:

http://www.scleroderma.org/

[Guest guest]

Hi Rob,

I am sorry about your diagnosis of scleroderma and yes you are

young. I don't know what is up with the 30s but that is when

everything changed for me too.

Do check out the web site www.roadback.org. I remember there was a

guy there who had the same thing and he was loaded with information

on dealing with this condition. Of course follow your MD's advice

but also do your own research, and it helps to talk with others who

have the same exact condition as you do. I think he is young like

you. It has been a couple of years since I was there. I have RA.

I haven't had lab work in a long while but that was the only

diagnosis they mentioned. I know there is much more by my

symptoms. I am in the process of finding another doctor who will be

a bit more thorough and aggressive in treating me as well as do my

own research, and you should too.

take care. keep us posted. talk to you soon.

love/peace,

Ebony

[Guest guest]

Hi Rob,

I am sorry about your diagnosis of scleroderma and yes you are

young. I don't know what is up with the 30s but that is when

everything changed for me too.

Do check out the web site www.roadback.org. I remember there was a

guy there who had the same thing and he was loaded with information

on dealing with this condition. Of course follow your MD's advice

but also do your own research, and it helps to talk with others who

have the same exact condition as you do. I think he is young like

you. It has been a couple of years since I was there. I have RA.

I haven't had lab work in a long while but that was the only

diagnosis they mentioned. I know there is much more by my

symptoms. I am in the process of finding another doctor who will be

a bit more thorough and aggressive in treating me as well as do my

own research, and you should too.

take care. keep us posted. talk to you soon.

love/peace,

Ebony