- CASE FILE
39 year old female lost hearing in right ear 5 years ago, chronic widespread pain debilitating fatigue brain lesions memory loss swelling
ABOUT THIS CASE FILE
Almost 6 years ago I woke up with no hearing in my right ear and an all around ill feeling. That was the beginning of my living hell. Mri revealed white matter lesions throughout my brain but doesn't explain the hearing loss.
I'm constantly getting lung infections, have widespread chronic pain, and when I have a flare, my hands and legs swell, brain fog, my hands and feet forget how to work so I constantly drop items and fall, skin starts blistering and peeling, the pain is so bad that I'm unable to get out of bed, I cant keep anything down, my hair comes out in chunks, I get a squeezing/pressure feeling below my ribcage and stomach area but my hearing partially returns for 2-3 days. I lost my job, my home and my husband left me because he couldn't handle it. I'm constantly in and out of the hospital because of how sick I get and now have to use a cane on my bad days, which is becoming more frequent. I have been tested for everything. I was diagnosed with Common variable immune deficiency and recently I was diagnosed with Ehlers danlos syndrome. Each doctor I see has a different diagnosis and a new medication they want to put me on. I was up to 24 medications at one time, all of which I stopped, with the exception of 4. I'm scared that I'm not going to live long enough to see my 2 children grow up because I'm only getting worse, despite everything. I'm afraid that whatever this is, it's hereditary and my children are going to suffer like I am.