I had severe anemia when I was admitted in the hospital for blood clots at Christmas. So I was referred to a gynaecologist because of heavy periods (they checked fir blood loss by colonoscopy and endoscopy but found I wasn’t losing blood that way).
She was by far the best of all the specialists I have seen for follow ups since! I have seen vascular surgeons, rheumatologist, hematologist, pulmonologists...she sat and answered my questions for two hours! She pulled up all my tests and showed me all the write ups the doctors did while I was in the hospital. I thought I had blood clots here and there. She looked at me, shook her head, and said “I don’t think you understand! The clots are massive! None of the specialists can understand how you are alive today!” Apparently, I have one clot that extends from my thigh all the way to an inch from my heart. And the clots in both lungs are huge. I asked if they would be absorbed by my body by now, it has been four months. She said I am looking at years - at least two.
So being so tired when I get home from work is normal, and expected. I told her lately I have been falling down. My balance is totally off. She said to call my rheumatologist. I told her I don’t understand why everyone is leaning towards a diagnosis of lupus with anti phospholipid syndrome, since my blood work has come back negative (except my ANA is pretty high). She said every other cause has been ruled out and lupus makes the most sense. I have many of the criteria. She said it may take time for a definitive answer. So...my biggest worry is if I don’t know for sure what caused it, what I did for this to happen, how can I prevent it from happening again?? If I am SO lucky to come out of this alive, who’s to say the next time I will be so lucky?? How did this happen to me?? It is frustrating that nobody can give me a definite answer...
Serious question about hydro 
A little worried. 
PS To my saga re having a referral to Man Royal Infirmary to Lupus specialist?
