Dawn’s Story (Undiagnosed)

In April 2012, I woke up one morning and couldn’t move my left arm and had all-over body pain. I went to the chiropractor. Because I had been working out 3 times a week at the local Y, I thought I could just be sore. I knew something was weird when, on the treadmills, my heart rate kept jumping and dropping. I reported this to all my doctors, along with the chiropractor. They said the machine had to be messed up. I know better. I changed treadmills and bikes several times, and the same happened. My doctor did labs, and all the blood work was perfect. Later, she sent me to an arthritis specialist, who said my C-reactive protein was high, showing inflammation somewhere. I couldn’t tell if the pain was coming from the muscles or bones, so I later went to a neurologist, all while taking Norco and tramadol for pain.

The EMG test showed I had a delayed response in the brain as she was shocking me. I later went for an MRI. Results say there’s an infectious hematoma in the left cerebellum. Same with the spinal MRI–2 lesions on L2 and L4. They went with an MS diagnosis, but wouldn’t give me meds until they were sure, since treatment sometimes is worse that disease. The lumbar puncture showed protein in the CSF fluid at 176. Normal for my age is 15-45.

I still, almost 4 years later, have severe muscular pain, bone pain, and headaches, and some days it feels like my body is shutting down. No matter what I’m doing, I have to go to sleep. That was another symptom. I just couldn’t get out of bed. The doctor put me on adderall to help me get up and focus on day-to-day activities. My nurse practitioner told me she was pretty sure a virus had attacked my central nervous system, causing neuropathy in the right foot and leg and all the pain.

Two years later, we did another brain MRI and saw no change in the size of the lesion, hematoma, or tumor. They have called them all 3 of those. In Oct. 2014, I went back to work full-time. I can maybe work a 10-hour day under pain meds, and then my day is over. I come home and have to lie down. My daughter volunteers for a hospice, and we all had to pass drug and TB tests. I failed mine, so after my nurse practitioner did all she knew to do, I changed doctors. He isn’t taking my condition seriously.

I’m now looking for internal medicine and a neurosurgeon, hoping they can get to the bottom of what’s going on and get my life back. I see pics of myself from 5-6 years ago, and I would love to feel normal again. I have also gone up to 180 lbs after getting sick within a month. About 2 years later, I went down to 120 lbs in 10 days. The doctors said it was fine. I know that’s not fine. I haven’t had an appetite in 4 years, but I do stay thirsty. All they are doing is sending me to a pain clinic for meds to control my pain. I’m to young, and I need to be fixed and off the meds.

Glad I found this site. It’s time to take my health into my own hands. I work for health insurance. I have gotten maybe 25% better in order to work, but like I said, thank God for a wonderful husband who does support me and takes care of our children, who are now 14, 19, and 20, with a grand baby on the way in July. Thanks and prayers are appreciated.

Dawn
South Carolina
Submitted 02/24/2016

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.