Question
QUESTION: What are the odds that I might have scleroderma?
History:  Raynauds for approx.10 yrs but recent severity increasing. Began seeing Rheum.about 6 yrs ago due to severe fatigue, daily fever 100.0, all over joint pain & skin touch sensitivity, easy bruising, sleep depravation (mostly due to Post Herpatic Neuralgia fr shingles).  Once sleep was treated w/amytriptaline, other symptoms gradually improved. Still have episodes of symptoms-but rest shortens duration.  Dr said I had some markers for auto-immune but not enough to "label" it (not enough points for fibromy.).  Follow-up 1ce/yr.  Recent visit did capillary nailbed test-was positive.  Also have swollen hands/feet, red dots on abd, arthritis in bigtoe joint.
Other recent medical problems: gallbladder removed, narrowing of sphincter valve in bile duct requiring 3 repeat cuttings of valve (cholangitis), kidney stones w/blockage & enlargement, pluresy 2ce, shingles 2ce, multiples sinus & strep infections, uterine polyps w/bleeding ending w/hysterectomy, last 3 yrs developed soft-tissue tumors that press on nerves-had to have 6 removed-pathology said they have bloodvessels in them (note: I've developed 3 more in the past 6 mos). Spontaneous (no injury) ligament damage in left wrist resulting in hole in cartilage requiring 3 surgeries.  Tendonitis in right forearm.  Severe case of C.Diff in April resulting in chronic diahrea/colitis, recent problem w/rapidly developing ulcers in duodenum/sm intest & possible obstruction of pyloric area of duodenum (still being investigated). Hospitalization in Oct showed elevated TSH level 13.47 (thyroid). Whew-that was exhausting. Rheum. has ordered 21 bloodtests & I'm going for scleroderma panel tests on Dec.12: lungs, heart, swallow, xray hands&chest.
Thing is, my last ANA was negative (done in October).  So what do you think?

ANSWER: There are about 303 million people in the US and between 75,000-100,000 people with systemic scleroderma (affecting more than just the skin.)  So, out of the 100,000 people seated in the proposed National Stadium for the Beijing Olympics, 2 people would have systemic scleroderma.

That said, an abnormal nailfold capillary test would indicate secondary Raynaud's, meaning there's some other disease or condition present.  Most often this is a connective tissue disease, but there are other possibilities.
http://www.clevelandclinic.org/heartcenter/pub/guide/disease/vascular/raynauds.h
A negative ANA test would suggest that your problem is _not_ autoimmune, but your doc may want to retest that if other symptoms continue to point in the autoimmune direction.

I sympathize with you - these diseases and related conditions are tough to pin down.  Some would say it doesn't really matter if you know or not since there's no cure for scleroderma, for instance.  However, progress is being made in treating symptoms and complications of scleroderma, and successful treatment depends on early detection (scleroderma renal crisis, for instance, is very treatable when an early symptom of sudden, severe increase in blood pressure is treated.)  Your doc sounds like a keeper - s/he's going after all the testing to at least establish a baseline if not to shed more light on what's really happening.

Keep as positive as you can in the face of all of this and continue to work with your rheumatologist.  It won't hurt you to continue to seek out information on the possibilities as long as you continue to keep in mind that not everything you read about that _might_ happen _will_ happen in your case.

You may have already started a journal of symptoms to help provide your rheumatologist with more accurate information.  If not, start.  Write down as much as you can - symptom, time and day, what you were doing when it happened, etc.  In this case, more is better - let the doc decide what's significant.  You can use the same log to write down questions you think of between appointments - something I always forget if I just rely on my memory!

---------- FOLLOW-UP ----------

QUESTION: Very informative, Thank You!  I forgot to mention that I developed Trigeminal Neuralgia in March.  Also that all my life I have had very low blood pressure, but in the last year I have been told several times that my blood pressure & rate are high.  I guess I will just wait to see where the results of the tests lead me. Thanks again.

Answer
Trigeminal neuralgia is, rarely, a nerve involvement in scleroderma, but of course, it occurs on its own, too. Blood pressure is variable, and affected by so many things - stress, diet, weight, etc.  BP increase in SRC is sudden and severe - in my case, normal on Monday, 213/131 on Saturday.  Something you'd notice if you take your BP weekly or so, which with the uncertainty of what's going on, I would if I were you.  Another thing to add to your journal!  Best wishes to you for a speedy diagnosis and successful treatment.