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celiesblues

Scary changes to my hands

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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

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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 Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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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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 I stumbled onto this thread while searching for answers for my 32 year old daughter.

 

Six weeks ago she started experiencing a variety of symptoms starting with fatigue. She just got married eight weeks previously and thought a lot of this was attributable to the stress with that. However as time has gone on there have been new symptoms. We have seen a cardiologist, neurologist, OB/GYN, internist and and endocrinologist. She has had countless blood tests done all that come back normal. Present day,  her hands, when exposed to water for less than five seconds, immediately start to prune and become sensitive. To shower is very painful for her. If she even lifts a small half filled water bottle, it leaves an indent on her index finger.

 

Her endocrinologist,  whom we saw last week and is the highest recommended in her area,  has said he has no idea what is going on with her. She seems to be able to come up with different testing that he does. We are scheduled to go to the Mayo clinic on August 16. I'm not sure if this thread is even still active but if it is I was wondering if anybody could give any ideas or suggestions. 

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Hi Christy,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been experiencing worrying symptoms. Whereas the symptoms you describe could possibly relate to scleroderma or other autoimmune diseases, they could equally relate to any number of other health problems. However, as we are non-medical volunteers, with no trained medical knowledge (apart from a now out of date first aid certificate in my case :wink:) we provide basic support and general information and therefore are unable to give any diagnosis.

 

I've included a link to our medical page on Preparing for Doctor Appointments and would recommend that you list your daughter's symptoms and any other queries you may have , in order to present them at your consultation at the Mayo Clinic on 16th August. Hopefully, they may be able to advise you on any treatment needed or further action you can take.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Christy,

 

So sorry to hear that your daughter is experiencing health problems.  It sounds like you are taking the right steps for a diagnosis.  There are a lot of strange illnesses out there that are hard to diagnose and the experts like the doctors at the Mayo Clinic are equipped with the knowledge, experience, and equipment to increase the chances of getting a diagnosis.  Jo has provided some great information, so all I can add is to take as much information as you possibly can so that the doctors can be well informed.  Ask your daughter to go back at least a year and identify anything that was out of the ordinary.  Some diseases do take months and even years to manifest, so any and all information will be helpful to the doctor. 

 

Please let us know how your daughter is doing and if any diagnosis is reached.  All sharing of information is helpful to us all.

 

Big Hugs to you and your daughter,

Janey


Janey Willis

ISN Support Specialist

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Hi Janey,

 

How lovely to hear from you again and I do hope that everything is going well for you and your family. :happy:

 

:hug-group:

 

Best wishes to you.


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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 Christy,

 

Welcome to Sclero Forums.  I'm sorry there are concerns for your daughter's health. 

 

Please keep in mind that I'm not a doctor, and have no medical training at all.  It's possible that a few of her symptoms may be within the realm of normal, and if any of them can thus be taken off the list of worrisome, it may help her doctors figure it out quicker. 

 

For example, although it may very well be new or more prominent for her at the moment, it's normal for fingers to wrinkle when exposed to water.  It's actually considered to be an evolutionary advantage, in that it helps us grip things better when they are wet.  Skin staying indented after pressing is a common sign of dehydration, and dehydration would also make the wrinkles more prominent. 

 

Feeling pain from water exposure, though.  That's a little different. It could be that the temperature changes are too fast.  To check for that, start water at room temperature. Is that comfortable?  If so, then try changing the temperature very slightly, hotter or colder.  Is the problem the water, or the temperature of the water, the pressure of the water, or the rapid change in temperature?  And, what type of pain is it?  How long does it last? How fast does it go away? How does it go away?  

 

Importantly, does any part of the skin turn colors, such as dead white, deep dusky blue, dark purple, or bright bright red?  If so, the color changes might indicate Raynaud's and that may be the cause of pain.  Happily, Mayo Clinic has vascular laboratories where they can test it all out with scientific precision. 

 

With scleroderma, it'd be more likely that her fingers would be swelling up like sausages (not shrinking), and the unmistakable color changes would usually be stark enough to garner attention right off the bat. 

 

But there are millions of other conditions, including erythromelalgia and even cold dermatographism that may be at play. Post-wedding exhaustion, even depression, is a real thing in and of itself, and it would be made worse by so much concern and so many doctor visits; and also the exhaustion would make the other symptoms seem vastly more significant than they might be when encountered without the fatigue hitching a ride. 

 

Altogether, it's great to get checked out by Mayo.  It's really great that your daughter has passed the other tests, so far.  It's quite possible you'll receive some "happy" answers, meaning, something less than something as potentially serious as scleroderma to deal with.  You're doing all the right things.  Gather information, get a second opinion, and let the chips fall where they may. 

 

This must be interfering with their honeymoon stage.  I hope matters get settled soon so the focus can return to them building their new life together.  I'm sure you all amply deserve that!

 

:hug-group:


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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