PATCHY MENINGITIS OF THE BRAIN- anyone heard of this?
Hello my sister has been sick for 8 years. First it was breast cancer, then they said it went to her brain diagnosed her stage 4 . She for whatever reason she didn’t believe them, because the headaches started before she noticed the lump. UCSF did so many spinal taps poked prodded her for years. They did say it was not related. Thank goodness. But then after surgery for double mesectomy. She got worse. She took kemo for the cancer . No more breast cancer. BUT her headaches were so bad she would throw up violently. Could barely move . The doctors gave so much steroids for so long just to keep her alive until they figured out what she had. 5 years later gaining over 200 pounds from steroids/ braking both hips, her leg bone, almost had leg amputated 2 times . ( because her skin was so thin if she even tapped her leg against the wall it would split open ) eventual wound would not heal & went down to bone. So obviously she has an auto immune disease too. So finally, they diagnosed her with patchy meningitis of the brain.
Less than 3% of the world has it . At her oldest daughters wedding 25 mins after watching vows my sister goes into a diabetic coma. RIGHT in my arms. She has been in hospital so many times .
Well she took 4 treatments of some 15 hr kemo treatment in the hospital . And thank god this reduced it . She had been on the road to recovery. She lost almost 160 pds. Now her second daughter is getting married . My sister just found out this disease is back & moved to front of her brain .
DOES ANYONE KNOW ANYOTHER PERSON WHO HAS THIS ? She is desperate! Please help