- CASE FILE
Diagnosed with lupus affecting my nerves, but my doctor feels that I also have some other neurological or autoimmune disorder as well.
ABOUT THIS CASE FILE
I woke up from a spinal refusion surgery 3.5 years ago and was told surgery went great no problem. But when they did the physical check I was no longer able to move my left leg from hip down. After 9 weeks as a patient in the nursing home for physical therapy, I was told the doctors and therapists did not believe I would ever get back the use of my left leg. After seeing at least 25 doctors I was sent to Dr Grant Louie a rheumatologist. He diagnosed me with Lupus that affect the nerves anywhere in my body. Since it all began I have been losing sensation in my abdomen and right leg. I have done IV medications, and oral drugs trying to slow down the lupus to no avail. The last treatment was six months of cytoxin a chemotherapy IV drug. Which seemed to put my Lupus into remission for a few months, but unfortunately has stopped working. I have severe fatigue and headaches most days. The pain in my lower body is typically around a 7 or 8 even with a spinal stimulator and narcotics. I have lost sensation in my lower bowels and bladder which has caused accidents and cramping that can double me over. I have been using a manual wheelchair since my leg became paralyzed with little trouble until about four months ago. Just pushing from my bedroom to the bathroom leaves me exhausted and my heart racing. I have postural orthostatic tachycardia syndrome and it has become more problematic too. I was in a car accident three weeks ago which left me with more pain in my mid back and no feeling in my right leg, as well as no hearing in my right ear. Leg and foot swelling gets so bad that my skin becomes tight and shinny. Many days my entire body including my face will be swelled or bloated bad enough my clothing is too small and my sandals won't fit. I have had 64 surgeries in my 36 years. And after going through my medical history dr Louie and I feel that the Lupus is most likely the cause of many of my problems from my past. The issue now is that my bloodwork is not showing me in a flare up but I am having a ton of symptoms. I don't want to become a quadriplegic if at all possible. I want to stay as self sufficient as I can for as long as I can. But I am becoming more depressed and desperate to find the other illness that is causing me to lose more of the few freedoms I have left. My fiancee does everything he can to help me and support me but he is also facing a rare disease call myotonic dystrophy. He is watching his dad slowly and painfully die from it knowing the same will happen to him but at a much younger age. We need your help to chase the cure.