celiesblues

Scary changes to my hands

23 posts in this topic

Hi Celiasblues

 

You can also have positive ANA bloodwork and still not have scleroderma yet too.....like Amanda says, a collection of information/symptoms is needed as well. My rheumatologist says the bloodwork assists in the diagnosis but that the other clinical symptoms must also be present for scleroderma (so bloodwork alone is not enough either). Good luck with your appointment tomorrow....hope you come back and keep us updated.


Sending good wishes your way!

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Well, my dr had an "emergency" and canceled on me today so I'll be seeing him on Friday instead.

 

 

Amanda, snowbird thank you so much... it was never clear to me if the blood tests had difinitively ruled it out.

 

And now I have a host of more symptoms since I was with him last yr...

 

And just last night I noticed the skin down the insde of one of my thumbs has begun go harden. Lovely.

 

I'll let you all know how it goes on Friday.

 

Anxious, anxious....

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Hi everyone,

 

I saw my doctor on Friday and says he doesn't think what is happening to my hand's is autoimmune as my ANA & RF screen were negative last yr. . He says though my Raynaud's is "secondary form" he thinks it's cause is hormonal (ie the birth control pills I use to control my Poly Cystic Ovarian Syndrome).

 

He's having me repeat the ANA & RF tests as it's been over 6 months and thinks I should be checking at that rate for a while.

 

He *also* says (as an eye specialist told me when seeking treatment for abrasions) that he thinks I have sicca syndrom (Sjogren's) because I've tested positive with the Schirmer's test (that measures dryness) and my mouth was coated.

 

He said that he might want to do a biopsy of one of the glands in my mouth to test for that at a later time.

 

What is strange to me is that I can find no link, no matter how I search on the net, to Raynaud's and birth control pills. Has anyone every heard this?

 

And so severe?

 

And Sjogren's is autoimmune, isn't it?

 

I hate leaving an realizing all the things you *didn't* ask...

 

I will see him again in 3 weeksso at least I'll have a second chance.

 

For the Raynaud's he wants me to start taking L-Arginine (supplement) 3x a day... to help the circulation....

 

At first I was relieved and reassured but now I'm swirling in those ambiguous loose ends... :-((

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Hi, Celiesblues

 

I found this information on the MayoClinic.com article about Raynaud's under the Treatments and Drugs section:

 

Birth control pills. If you use birth control pills, you may wish to switch to another method of contraception because these drugs affect your circulation and may make you more prone to attacks.

 

Mayo's article on Arginine offers some warnings of danger in some situations (asthma and certain lung conditions, among them). I also came across some medical trial information which warned against use by patients who had previously suffered heart attacks. I would definitely ask my doctor about this if he offered this as a solution.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hello Celiesblues,

 

Sorry your appointment has left you with many questions, perhaps writing some down for your next appt would be helpful and taking someone else in with you to remember the replies. My husband always comes with me.

 

Yes Sjogren's is an autoimmune disease.

 

Keep us posted and I hope you get some definitive answers after your next appointment.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Celiesblues, 

I was wondering if you ever figured out what was going on with your hands exactly.  I have the exact same symptoms to a tee.  I know you posted this 7 years ago but I'm hoping you will still get the message.  I would love to know how things worked out for you/what I have.  Thanks. 

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Hi Flen130,

 

Welcome to these forums!!

 

I'm sorry to hear that you're experiencing problems with your hands; not knowing the cause of the problem is often far more worrying than the problem itself!

 

I would suggest that your best idea would be to see your primary doctor (if you haven't already) and have any worrying symptoms further investigated.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Flen,

 

Welcome to Sclero Forums!  We have a series of videos about scleroderma and symptoms and diagnosis, by Amanda Thorpe. You might find them helpful, perhaps be able to tell if your issue is scleroderma-related, or not. 

 

Please see:  http://www.sclero.org/scleroderma/videos/a-to-z.html

 

Have you had a chance to see a doctor about your health issues, yet?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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