Hi sarcoid people,
My name is Helen and I am 33 years old and about to be diagnosed with an 'unusual' presentation of sarcoid.
My neurologist wants me to have a gallium scan to confirm. Apparently the radioactive gallium attaches to red blood cells which will congruate around areas where the deposits of granuloma to show.
My symptoms started with sensory peripheral neuropathy resulting in left foot drop by Nov 2015. I then was very weak and fatigued and referred to see a neurologist. He completed alsorts of neurological tests, lumbar puncture, mri's etc. All this could not pinpoint anything particular, so some form of autoimmune disease was suspected. I had a course of IVIg and was discharged.
Following this I continued my life with my husband and 2 children of 6 & 2 and went back to work as a nurse working in a discharge team of a very busy hospital. After 2 weeks of being back I had a Bell's palsy and was very concerned then that something was progressing. My consultant said they were not connected and reassured me. He commenced me on iv steroids for for days with a reducing dose to take home. Once discharge I felt fab I was signed off work for 4 weeks to properly get over these episodes. I was walking the children to school/nursery, cooking, cleaning, my house was imaculate and I had lots of energy to walk children to park etc etc.
Once I returned to work my energy levels zapped, my legs became weak I had a constant thirst. My colleagues were concerned with my decline and tracked down my registrar who seen me and admitted me as an urgent case.
I was diagnosed with hypercalcaemia (side effect of sarcoid) one of my blood tests and some protein in my lumbar puncture that also indicated this rare condition. I have had lung X-rays that do not show any deposits. My consultant will not commence steroid treatment until diagnosis is completely confirmed.
As I have had a lose of function of peripheral neuropathy in my good leg and right hand does anybody feel the steroids will work to improve loss of function.
Does anyone have any similar experiences? This whole experience for me has been totally frightening how I have gone from a fit and active 33 year old mother of 2 with a good job to having a permanent disability (foot drop) and the cause of this seems to be sarcoid.