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...
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Willow7733
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🤩 💐👏👏👏👏👏 YAAAAAY WILLOW: many thanks for every detail...you have been through a BIG BIG important ordeal + SURVIVED...you give us all HOPE... it’s CRUCIAL this good medic is helping you understand your case inside out (😉)...please continue to keep us posted
What baba said. Could be primary APS vs SLE and secondary APS.
Anemia with clots happens quite frequently because clots eat up all of your clot making proteins and leave you bleeding/oozing more even while you are clotting. It’s imperative that they also make sure your iron, folate and B12 levels are normal. Sometimes we eat through red blood cells and all the good things that help make them.
I hope they figure things out. It’s never easy needing to be on a blood thinner with unidentified bleeding source. I hope you get answers soon. Sending hugs your way. ❤️xx
Funny you say to monitor iron and folate. After seeing the rheumatologist (I had been in the hospital for two weeks by then), they suddenly gave me a new pill and said it was folate. I also had five iron infusions by IV throughout my stay.
I’ll pray for you and answers willow. Sounds like you have a lot going on and are very sick. Sounds like your providers are helping you the best they can and I’m happy for that. ☺️
What a gem that gynecologist is! You have really been through a lot. I understand your worry about diagnosis certainty. But the doctors see many signs - positive ANA, blood clot, butterfly rash. They will be watching you like a hawk and have you on medication to prevent recurrence.
You are a tough cookie! There is good treatment for APS. So you can have hope.
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An opinion from the sleep specialist
I saw something about a 'cutest cat competition'?
New here - looking for a specialist
LUPUS Specialist Nurse
So I don't have lupus...
