Living with a rare disease / contacts are searched Kiel – just had Monika Bauer) * still thought it had something to do with the kidneys. \”Then came the hammer diagnosis: large extradural meningeal cyst type 1 according to Nabors with compression of the cauda equina and pressure Arrosion, especially the dorsal vertebrae annex structures\”. What did not know Monika B.: you had just diagnosed with a rare disease. Cause and history are largely unknown. Since then, Monika B. makes a painful gauntlet and feels infinite alone with their disease. The Odyssey began last year.

Out of nowhere, the 40-year old Monika B. got so severe pain in the kidney area, that she went directly to the nearest hospital. I had the feeling that I have a cold the kidneys. Still back and head pain were later\”, she describes the symptoms. The suspected kidney problem was not confirmed in the hospital. A magnetic resonance imaging (MRI) was the cause of the pain to light only.

I got real lucky with the Orthopedists, which was the primary diagnosis at the hospital\”, says Monika B. Just because this is have exchanged in advance by chance with a Swiss colleague on one of the local patients, the clinical picture was ever known him. Unfortunately I depend on but also on my established doctors on the spot \”, says Monika B. sorry. A practising orthopedic surgeon claimed her diagnosis was nonsense. There were cancerous tumors on the MRT. In itself I can see now the Cystic extensions on the images\”, Monika scolds B. It adds: there is only this an orthopedists in the hospital, which gives me the feeling that he is familiar with the disease. But almost all other doctors with whom I had to do so far had probably don’t know or don’t want to deal with my illness. \”\” You feel abandoned by the physicians.