- CASE FILE
I NEED to stay alive and healthy. I care for my 22 yo with autism/epilepsy. I cannot get my (seemingly) autoimmune issues under control.
ABOUT THIS CASE FILE
I have been diagnosed with rheumatoid arthritis, psoriatic arthritis, alopecia, chronic pancreatitis, genetic pancreatitis, degenerative disc disease, and lots more. All of it started a month prior to getting pregnant with my son (22 years ago). I went in remission from the RA during my entire pregnancy, but was very ill throughout my pregnancy. Two weeks after his birth I had the worst flare imaginable. My son was born by c-section and seemed to be perfect until 3-6 month old. He lost his babbles and started grunting sounds, he began to be fussy and not sleep more than a couple hours at a time, and at 9 months old I knew he had autism. (I added this as I think we were both affected by a Hepatitis vaccine I had to get prior to my pregnancy to work in the schools). After my arthritis became sever enough (all joints swelling to a level where I could barely move) I finally found something that worked (Humira). I started Humira when it first came out about 15years ago. It kept me from being stuck in bed and unable to move (after Remicaid proved ineffective and caused me to be diagnosed with alopecia). Over tall these years my X-Rays, bone scans, MRI's, CT scans, etc. are usually normal even when I am feeling my worst, and needing to drain my grapefruit-sized knees. Since July 14 I've had a pancreatitis flare, and at that same exact time presented with a new symptom - severe pain in my upper right quadrant, but even worse pain in my right shoulder, neck, and arm (down to my wrist). I have been to my GP, Rheumatologist, Gastro, and even the ER to only be sent home with no answers (and of course suggested pain meds (which I try to avoid). I think it may be Leukemia as the pain in my bones (sometimes feeling like burning) does not subside. I've racked up thousands in medical bills this year, have a spouse who just survived stage 4 cancer treatment and is still trying to get back to normal, and have an adult non-verbal son with autism and epilepsy that I care for. But, I have put myself ahead of them this past month to try and get better so I can care for them, and I am getting nowhere. My rheumatologist and GP both informed me this week that I probably need to find new doctors/specialist because they are at a loss in helping me.