A new twist

A while back I mentioned that I have Raynaud's syndrome.  Essentially this is a circulation issue that causes the blood vessels in your extremities to constrict and your fingers and toes to turn white and blue when you're cold or anxious.  It comes in two main flavors:  primary and secondary.  Primary is Raynaud's with no other underlying cause.  Secondary is Raynaud's associated with some other reason -- usually autoimmune.  I've told various doctors about it over the years but none have thought there was a reason to test for any other autoimmune issues.  I mentioned it to Dr. Six after I miscarried (after I reacted badly to a drug they gave me after the miscarriage that is contra-indicated with Raynaud's) but she didn't think anything of it.  Generally it is just a nuisance in cold months or when my hands or feet get cold and I don't really notice it.

So, what's the new twist?  I'm an idiot.  With Raynaud's, you have to make sure that you stay warm to prevent flare-ups.  For me, I have to keep my chest warm and always wear mittens, socks, long underwear, etc. when it is even vaguely cold out.  About two months ago, I participated in an activity with my students that required me to wander around barefoot for a couple of hours (note that I NEVER am barefoot or wear flip-flops).  My feet were cold and numb and splotchy white, but I didn't think anything of it because, well, my feet are always cold and numb. (Stupid, stupid Rebecca.)

A few days later, I started to have a weird, sharp pain on the bottom of my big toe.  It was like there was a sore, but I couldn't see anything.  Over the next three weeks or so, I slowly started noticing two small purple discolorations under the surface of the skin.  It was incredibly painful.  A stabbing pain that would come and go.  But, it would get better sometimes.  And, well, I was too stupid to see someone about it.  Why?  Because my primary physician at this point is the doctor I went to when I was pregnant and I don't feel comfortable with him right now.  And, I felt kind of dumb.  So, I kept procrastinating.  And, I'd think "well, if it still hurts on day x, I'll go see the doctor."  And, on day x, it would be OK.  So I wouldn't call.  Then, two days later it would hurt again.  That cycle went on for a while.

I wondered if it had something to do with my walking around barefoot.  But, I thought maybe I got a weird infection or there was a tiny piece of glass in my toe or something like that.  Yeah, either of those things?  Go to the damn doctor.  Me?  Kept putting it off.

After the purple dots started to get darker and bigger, my DH was convinced it was a wart.  So, foolishly, I decided to treat it that way.  That wasn't a great plan.  Because, now?  Now I have an open sore on the bottom of my toe that won't heal.

So, Monday I finally decided to call the dermatologist and go in to get it looked at.  The doctor took one look at it and my purple, splotchy, cold feet and said "This is an ulcer from lack of blood flow from your Raynaud's.  It's not healing because of poor circulation to the site and there's a risk of secondary infection.  If this happens again, come in immediately."  (It's being treated now and should be fine -- I'm not losing a toe or anything!)  He then started to ask about other symptoms and my IF and my m/c and why no one had ever done an ANA (antinuclear antibody) test on me.  (Apparently primary Raynaud's is not likely to cause ulcers while secondary can if you're stupid enough to let yourself stay cold for that long.)

So he ordered an ANA test.  And the results were positive and, in his words, the titer was pretty high.  So, now we're doing further autoimmune tests.

Tests that I wanted done when I first miscarried.  But, since it was "only one" loss, no one thought it was worth it and they said my insurance wouldn't cover it.

What will it show?  No idea.  Could be nothing.  There is a portion of the population who just tests high for ANAs.  There are myriad autoimmune diseases that it could be -- from very mild to scary but I'm going to avoid thinking about those until I have more information.  There could be an IF and/or m/c component to it or it could have nothing to do with it.  I haven't talked to Dr. Smiles, yet, as I'm waiting for the results of the other tests.  My dermatologist was wonderful because he was incredibly sympathetic to the IF issues. He even knew Dr. Smiles and had great things to say about him.

So, anyway, there you go.  Sometimes doing something really stupid can help you find something that you've been wondering about.