Early signs of systemic sclerosis

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 2/12/2009 7:10 AM (GMT -6)   
Hi all,  I've noticed with a few of your signatures that some of you do have SSc/scleroderma.  My mother had MCTD, of which SSc was a part.  She eventually developed interstitial lung disease and passed away in 2000 at the age of 58.  I have diagnosed RA, but have symptoms that progressively seem to match MCTD or early SSc.  I have raynaud's, like many of you, but it seems to get worse and worse every year.  I'm having a very hard time with this winter, with frequent attacks (even in 74 degree rooms) and constant fingertip swelling.  I have digital pitting all of the time, except for when I get out of a warm shower or bath.  I have a huge intolerance for the cold; I use a space heater year round.   I also have a hypomotility disorder of the LES, another sx of SSc and/or MCTD.  My arthritis is probably more similar to MCTD than to SSc.  I do not have the antibodies, however, for SSc or MCTD.  I have a negative ANA--but a positive RF (hence the RA dx).    I am a glaucoma suspect, specifically for normal tension glaucoma; this may be directly related to the raynaud's.  As far as I can tell, I meet the diagnostic criteria for CREST syndrome (I have the Raynaud's, Esopogael dysmotility, and I'm starting to get telangectasia on my face), but I'm only 40, so a bit on the young side for this issue. 
 
Should I bring this stuff up with my rheumy?  He knows I have raynaud's, but he doesn't know that it's gotten worse nor does he know of my huge problem with being cold.  He also knows I have the esophogael dysmotility problem, which he thinks is significant.  Does anyone have any experience with this? 
 
Thanks!
 
El
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/12/2009 10:33 AM (GMT -6)   
Hey El,
 
Wow, you do have a lot going on.  It is imperative that you keep your rheumy up to date with any new symptoms or test results. Absolutely a must. I have minor issues with my Raynauds, but like anything, if it got worse or I noticed it changing in negative ways, I'd be contacting my rheumy asap. I don't want to lose those fingers!
 
Your rheumy is your first line defense in keeping you well.  Keep the communication very open with them.
 
Wishing you well,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/13/2009 8:32 PM (GMT -6)   
Hi El,

Ginny gave you great advice! I agree! My experience is, that if I don't type it up to make it complete and concise, then I don't fit it into the visit. It is much easier for me to prepare my symptom list and bring it with me to hand to the doctor. I just hate complaining at doctor visits, but its necessary to give them all the information that can help them treat you appropriately. I hope you'll let us know how it goes.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 2/14/2009 7:17 PM (GMT -6)   
Thanks for your replies. I have another appointment in a couple of weeks. I'll make sure to let him know about my finger symptoms. As I type this, my fingers are getting more and more swollen. Very clumsy with the keyboard. Happy Valentines Day!

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex

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