I had a consultant appointment today to follow up my recent health problems. Over the summer I was diagnosed with Erythema Nodosum (EN) and Urticaria Pigmentosa (mastocytosis). I had three months of pain and worry - especially when bone marrow biopsies were mentioned and I was instructed to stop breastfeeding Dora in preparation for treatment!
Thankfully the mast cell tumors are limited to the outer layers of my skin, have not spread to any internal organs and are benign. The EN is in remission and may stay this way forever (fingers crossed). On the down side, the fatigue I have been experiencing could be with me for up to a year or even longer as a result of the EN and I have been diagnosed with Sarcoidosis (my need to Google is great) and have been referred back to my Rheumatology consultant for a suspected auto immune disorder (I have no idea which).
So when I say I feel fine, that's exactly what I mean. I don't feel great, but I don't feel anywhere near as bad as I did over the summer. Oh and did I tell you that I have to avoid stress and stressful situations as it can trigger the outbreaks of EN and Mastocytosis!!!!
10 months ago