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-   -   Scleroderma, anyone? (http://www.justmommies.com/forums/f379-autoimmune-diseases-and-disorders/1396261-scleroderma-anyone.html)

amberjolie January 16th, 2009 06:34 PM

Hello,

a quick intro to my situation because I might stop by from time to time. Back in October, I started getting what I now realize is Raynaud's phenomenon. Fingers going numb, then getting cold, then the tissue at the end dying. I've had at least one finger in massive pain since then, although it's moved from finger to finger. (Oh, and crippling fatigue, although I had just assumed I wasn't getting enough sleep).

Anyway, finally got a blood test a week or so ago and I was postive for ANA. The doc ordered a more specific set of tests for antibodies, because he's suspecting scleroderma (he's not thinking lupus because I was negative for some other test they do for lupus, can't remember what it's called). Anyways, I'm partly nervous and partly just trying not to worry until there's something to truly be worried about. Because I know for a fact I've got high levels of anti-thyroid antibodies (even though my thyroid hormones are in the proper range through medications). So I'm hoping that's what's been affecting the ANA test, and that it isn't scleroderma after all, which sounds pretty nasty. The doc's referring me to a rheumatologist too.

Anyone else on this board have scleroderma? Or for any of you ladies with an auto-immune disorder, any words of advice at this time?

Thanks in advance.

alethia January 19th, 2009 07:51 PM

hey there! I don't have Scleroderma, infact i know little about it. HUGS! I think the diagnostic period was one of the hardest times for me - not knowing really with all the possibilities. They also did the ANA test for me first - which slims down the possibilities as far as "horses" but opens up all the "Zebra" ones. Take it a day at a time and an appointment at a time! It's great that you are being referred to a rheumatologist - mine really helped me out a lot not only with diagnosis but really letting me (and you) know about what is the process that is going on and things to do about it. I know it's nerve racking. Remember to be your own advocate - i've had some pushy doctors. If it's hard for you get someone to come with you to your appointments - sometimes just having support is nice especially in the diagnostic period. Best of luck to you that they figure out what is going on quickly!!!!

M!che!!e January 20th, 2009 10:12 AM

the diagnostic period is the worse! i was diagnosed with systemic lupus in october when i was 7 weeks pregnant. i also have reynaud's phenomenon which made visiting my family up north a problem. it sounds like your anti ds-dna antibodies came back negative. that is the most definitive test for sle, but there are several other tests that can point towards a sle diagnosis. autoimmune disorders are so hard to pin point i know it can feel frustrating.

technically, you won't be diagnosed til your see your rheumatologist. i wish you luck and i hope you find out soon enough!

amberjolie January 21st, 2009 07:07 PM

Thanks for the replies! I have part of the blood test back - my anti-thyroid hormones are 418 (supposed to be <35). But they started over 1000 about 2 years ago, so they're going the right way. And I don't have any proteins in my urine, which the doc said means there's no significant organ involvement, which is good. But I still don't know what I've got, yet.

Found out also that back in 2000, I had a positive ANA test with a titre of 1:320. Don't know what the fluorescent pattern was. They didn't diagnose me with anything then because there were no other symptoms other than fatigue, and I was taking some meds which they said could affect the result. But I wonder if something was going on back then already. The titre this time was 1:640 with a speckled/nucleolar pattern, which is I guess why he's thinking scleroderma.

M!che!!e January 22nd, 2009 05:04 PM

Quote:

Thanks for the replies! I have part of the blood test back - my anti-thyroid hormones are 418 (supposed to be <35). But they started over 1000 about 2 years ago, so they're going the right way. And I don't have any proteins in my urine, which the doc said means there's no significant organ involvement, which is good. But I still don't know what I've got, yet.

Found out also that back in 2000, I had a positive ANA test with a titre of 1:320. Don't know what the fluorescent pattern was. They didn't diagnose me with anything then because there were no other symptoms other than fatigue, and I was taking some meds which they said could affect the result. But I wonder if something was going on back then already. The titre this time was 1:640 with a speckled/nucleolar pattern, which is I guess why he's thinking scleroderma. [/b]
1:640 is a high titre. my highest titre so far has been a 1:320. i also have had a speckled pattern also. for a fine speckled pattern the diagnosis rate for sjogren's syndrome is 95%, sle 40$ and scleroderma is only 5%. http://www.ii.bham.ac.uk/clinicalimmunolog...library/ANA.htm

have you had any other tests done? (anti - ro, anti la, anti dsdna?)

amberjolie January 23rd, 2009 06:20 PM

Quote:

1:640 is a high titre. my highest titre so far has been a 1:320. i also have had a speckled pattern also. for a fine speckled pattern the diagnosis rate for sjogren's syndrome is 95%, sle 40$ and scleroderma is only 5%. http://www.ii.bham.ac.uk/clinicalimmunolog...library/ANA.htm

have you had any other tests done? (anti - ro, anti la, anti dsdna?)[/b]
I'm not sure what the percentage is, but a nucleolar pattern, which I had as well as the speckled, can also mean scleroderma (but I'd have to look again to see if there are any other conditions that match with that - I'll check out your link - thanks for that!). All I was tested for further was (still waiting for full results) for the scleroderma-70 antibodies, anti-centromere antibodies (which also has to do with scleroderma but a more limited type), and protein electrophoresis (I think that was the term, can't quite remember). But none of the others you're mentioning.

But he's referring me to a rheumatologist, so if it's not pointing towards scleroderma specifically, I'll explore it further with the specialist in the field.

M!che!!e January 26th, 2009 05:18 AM

^ i didn't realize you also stated it had a nucleolar pattern. when i rechecked the chart that was all scleroderma results.

i saw your other posts and i wanted to say i am glad everything came back negative! i would still definitely see a rheumy just in case. but everything looks good! :cheer:

amberjolie June 17th, 2009 07:19 PM

Re: Scleroderma, anyone?
 
Hi - Actually (as per another post) I had another blood test - ANAwas1:640 again, this time all nucleolar. :frown: I'm guessing maybe the last time they only measured specific antibodies which came back negative.

And I've been having some other symptoms that seem to match scleroderma. Seeing the rheumatologist next Tuesday, so I'm expecting to hear a diagnosis of scleroderma - I'm at least hoping it's maybe CREST, which is less severe than the diffuse kind.

At least the medication I'm currently on has stopped the finger ulcers for now. They were sure painful!

I know this forum is pretty slow, but I may drop in from time to time by the sounds of things.

amberjolie July 5th, 2009 07:10 PM

Re: Scleroderma, anyone? - Updated
 
Yup, it's CREST scleroderma, so at least it's the less agressive and slower-paced kind. So far there isn't too much worrisome stuff going on, the only possibility is some shortness of breath and heart palpitations that could theoretically point to pulmonary hypertension (which is really bad), but I recently stopped the medication for my Raynaud's (don't need it over the summer), and noticed the heart palpitations and shortness of breath have really gone down - so maybe it was just the meds, which would make me feel much better.

My2miracles July 24th, 2009 12:43 AM

Re: Scleroderma, anyone?
 
I'm late to this but years ago I took meds for Raynaud's & I got heart palp from it. I've been med free for 14 years.'

There are natural ways to keep the ulcers away:

1. Keep warm. Not just your hands but your whole body.
2. Eat. I find that if I go without eating my body gets colder & I get the ulcers. I just can't skip meals anymore.
3. If you live in a colder climate like I do there are things to do to minimize getting cold
a.) rabbit fur mittens
b.) shearling (real) coat
c.) Ugg boots (I was wearing them before they became cool)
d.) Wool is your friend - sweaters, socks, pants etc.
It grossed me out at 1st to wear animals but I found it's the only thing that worked. I spend hundreds of $ on man made materials & nothing worked.

4. Don't hold glasses of liquid. I changed to all plastic at home. At restaurants, I wrap the glass in napkins.

And last but not least, you do qualify for handicap parking. I've had it for 10 years now & it's a life saver. People look at you funny but I've learned to ignore them.

amberjolie July 30th, 2009 06:35 PM

Re: Scleroderma, anyone?
 
Thanks for the tips - those are some good ones to try! I never thought about handicap parking. I'll see how next winter goes and if I just get too cold, I'll look into that further. I'm in Southern Ontario, so our winters can get pretty cold.

The eating part I'm pretty good at :p.

Do you find other parts of you get very cold too? What I mean specifically is that lately if I drink cold water, or eat cold ice cream, my mouth and throat seem to feel much colder than they ever did before, almost like I can't stand that temperature any more.

My2miracles September 20th, 2009 06:40 PM

Re: Scleroderma, anyone?
 
Sorry I haven't been around a lot. Yes, other parts of my body get colder too. My nose in particular now. It's really annoying but I've learned to deal with it.

How are you doing?

amberjolie September 26th, 2009 07:04 AM

Re: Scleroderma, anyone?
 
I'm not doing too badly. Found out my lungs are ok, which is great. I think they'll test me regularly for that. Also just got a test for Sjogren's, but lately my mouth's been nice and moist, so maybe it was just meds making it dry.

My hands are starting to stiffen up a bit, but still, nothing too bad.

One really annoying thing I'm finding, though, is when I'm on calcium channel blockers for Raynaud's, I have long menstrual periods (2 weeks). Not sure if its that medication that's doing it, or the interaction between it and my birth control pills. Don't want to get tubes tied, though, because I heard that also can increase menstration, and don't want that at all! One week's enough, thank you! But since you were able to go medication-free, maybe I can do it by keeping warm enough, too.

My biggest problem is FATIGUE. Sometimes crippling at times. I guess that's probably a biggie for most autoimmune disorders.

My parents have been on the look-out for rabbit's fur mittens, but they seem hard to come by nowadays. I may have to find something with wool instead (if I can find anything, that is). You'd think Canada would have better winter gear. It's all the new-fangled man-made stuff.

Thanks for asking!


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