Hi everyone, I’m a 32yr old wife/mother of a 5 yr old boy with Autism. I’ve been sick for a long time and I’m finally starting to get some answers, although there seem to be so many pieces to the puzzle.
I’ve had dizziness, disorientation, memory loss, weakness, all over pain that has gotten progressively worse for the past 5 years. I have an ectopic atrial beat which means my heart has created its own pacemaker as mine does not work (the heart can form a group of cells that can take over…very interesting). I also am intolerant to sugar and have been classified as hypoglycemic/glucose intolerant. My left leg is unstable and I’m having trouble with balance and falling to the left. I fail the heel to shin test that neurologists do but they claim I’m fine.
This summer I learned that I have a pituitary microadenoma (which appears tiny and inactive so far after testing), I have Chiari 1 Malformation, mild scoliosis, possible Rheumatoid Arthritis (I show something called pannus on my atlantoaxial joint where my head/neck meet) and I exhaust to the point of needing to lie down after a walk around the block.
I saw Dr. Caputy at George Washington University for a neurosurgery consult, he did a Cine MRI that showed some attenuation of CSF flow but he insists that my Chiari can’t be causing symptoms or balance issues at 5mm. He was very short both times I saw him and wasn’t willing to engage much in deeper questioning so I’m hoping to see Dr. Henderson as I live in Montgomery County, MD but right now we just can’t afford it. I also I saw a Neurologist from GWU, Dr. Aggarwal, who after seeing me fail the neuro tests said that the MRI and EEG I had seemed fine and she asked me if I could be making it up as a manifestation of stress. I saw an orthopedic for neck and back pain yesterday and learned about the scoliosis, and I saw a Rheumatologist today who has ordered blood work and started me on a pack of Medrol (steroids) to start getting the pain under control while she figures out what Rheumatologic things can be addressed.
I’m tired and feel like this is so far from getting better…each day is a struggle, trying to get better quickly because my son needs me & I need to keep my job (memory and fatigue are main issues at work)… I could just really use some advice and encouragement. God bless you and thank you for listening.