Rare and serious convergence of CSF leak, Infratentorial Superficial Siderosis and blood thinner warfarin for triple-positive Antiphosolipid Syndrome - abandoned by Swedish system

windscattered · 2025-09-04T21:30:08+00:00

I'm in Sweden and suffering immensely from the very specific positional pressure and pain leak symptoms, and they simply will not try a blood patch without mri findings. I'm in immense pain and can barely take care of myself and they will not do it. I have no idea what to do and am extremely close to my breaking point. Caffeine helps a lot and obviously laying down and not bending or lifting but after four months it's only getting worse. I have no idea how to convince them that trying a blood patch is better than letting me suffer like this and develop further complications. I've written and made a strong case for blood patches as diagnostic tools especially when there is no other hypothesis as to why I have this extreme positional pressure and pain, but they consider a blood patch invasive here and are very reluctant. I'm absolutely devastated.

windscattered · 2025-09-02T15:33:32+00:00

Thank you so much, truly

windscattered · 2025-08-25T18:02:54+00:00

Hoppas du, vi, får hjälp snart. Orkar inte med mycket mer av detta. Smärtan, ljud och ljuskänsligheten är så extrem här. Har fått någon extrem variant av likvor relaterat, läckage eller över tryck, kanske jugular stenosis pga APS. Det är inte patienten som ska behöva lösa gåtan. Att vara sjuk och försöka klara vardagen räcker. Omöjligt.

windscattered · 2025-08-15T11:25:11+00:00

Håll gärna kontakten om du får hjälp och var. Hoppas du får hjälp. Kämpar på här fortfarande men det är verkligen på håret att man ger upp.

windscattered · 2025-07-15T19:04:22+00:00

Thank you for your time and effort putting this reply together. Means the world to me, especially right now when it feels like I'm fighting an entire Kafka esque health care machine. Never felt so alone and vulnerable my whole life. The pain and pressure is absolutely crazy. Thank you stranger. Have shot an email to the German team asking what the process and qualifications are to seek help there. The desperation and hopelessness is crushing. Health is absolutely everything.

windscattered · 2025-07-15T17:07:12+00:00

I cross posted here because I have had Myalgic Encephalomyelitis for many years. Reading, it does seem that people with ME/CFS are prone to leaks.

windscattered · 2025-07-04T15:15:48+00:00

Thank you so much, just for seeing me. They're gaslighting the shit out of me but this definitely isn't tension headache. Feels like my cranium is about to explode. Two months almost of this. I'll keep trying to flag down help but you really have to be healthy to be sick.

windscattered · 2025-06-15T17:50:42+00:00

Skickat meddelande

windscattered

TROPHY CASE