Just got the news!
I am 25 years old and I just found out yesterday that I have a primary diagnosis of Lupus. This is all pretty shocking to me because there is no family history of autoimmune disorders in my family and up until recently I thought that I was very healthy.
This past winter (only about 4 months ago) I noticed a small bump on the tip of my big toe. I wasn't concerned and didn't pay it much mind until the mark continued to grow and become very painful. I eventually went to a podiatrist and had the lesion biopsied. The lesion came back as being Pernio (chilblains). I have had Raynaud's for a very long time. I have showed my feet and hands to numerous doctors and no one ever expressed any concern. No one EVER warned me that I may be susceptible to sores and lesions or that the Raynaud's could possibly be secondary to an autoimmune disease.
I decided that having a lesion from Raynaud's is not the norm and that because of this it must be more severe than I thought it was. So, I was proactive and I decided to go to a new PCP. As soon as my new doctor saw how horrible my Raynaud's she started me on Amlodipine and sent me for blood work immediately following the appointment. I found out 3 days later that my ANA was positive and she recommended that I follow-up with a Rheumatologist (this was all about 3 weeks ago).
At my first appointment with my Rheumatologist he explained to me that I needed more thorough blood work done and that at this time I didn't meet any specific criteria, so I left with a diagnosis of Undifferentiated Connective Tissue Disease (UCTD). Well, I went back yesterday and I would now like the UCTD diagnosis back! haa
My ANA titre is very low (only 1:40), however my DS-DNA is very high. My platelet count is also very low. I left my appointment yesterday meeting more than the 4 necessary criteria for Lupus and now I don't know what to do with myself!
I started Plaquenil today. I know that it is going to be a slow process until I begin to notice any changes. The most difficult aspect of all of this is that I feel unprepared. I never thought that I would be affected by something like this and now that I look back, I have been dealing with this for so long. So I am struggling between being angry, feeling sorry for myself, and also feeling validated.
Although I have very supportive friends and family, I have found it very difficult to articulate to my closest friends and boyfriend what this means for me. I don't think they really understand how serious this diagnosis can be and the changes it may have on my life. For those of you that have dealt with similar circumstances, what is the best way to approach this? How can I educate my friends and boyfriend so that I get the support that I need?
Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)