Reply To: Anyone Still Here?

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No – no other diagnosis. My whole life, for as long as I can remember, my hands and feet were always colder then everyone else’s. It was my normal and never really thought twice about it. Then about 5 years ago, I started having red, painful, round raised nodules/rash on my hands. They were only there during the winter months and would completely go away in the summer. I kept thinking about seeing a DR for it, but they were not that bad. Kinda just ignored it. Then this last December – that same rash, red hands, etc came back but way worse then ever before. Then this winter for the 1st time – I was having it on my feet too. My toes had these sores on the skin close to the nail that looked like awful blisters. My toes were purple and cold. I was starting to have episodes of feeling like I was frozen from the inside. Like my blood was cold. It didn’t matter how many layers or what heat source I had – I was cold. Presidents Day weekend – it was so bad I ended up in urgent care. Freezing, purple toes, the rashes…all of it full blown. They ran the blood work, put heat lamps on me and sent me home. Results came back – ANA positive and anti-SS-A positive.

I have had 1 appt with the Rhumatologist and she just said it was Raynauds. Put me on the plaqunil. Since then, I’ve done a lot more research and I’m starting to understand that the Raynauds is secondary to whatever other issues are going on. But, no one has give me that name yet. I do need to follow up – just wasn’t sure which Dr to go see next? or go back to the Rhumatologist.