Tuesday i am going to the movement specialist to get confirmation that I have cerebellar ataxia. (per my neurologist)I am fearful as always that he wont know what is wrong with me, or that he will think its all in my head.My experience with the research doctors at UNMC have been positive but when my symptoms reappeared in Sept,, the first neurologist(private practice)could not find anything confirming a diagnoses, and told me a needed a shrink. Ha. On my MRI it confirmed a abnormal enhancement in two areas, one being my cerebellum, showing duplicate signs of a neoplasm, cancer cells.cells. Luckily I found a neurologist mins from my home that confirmed ataxia just by my symptoms alone, and referred me to the movement disorder specialist. I am nervous, afraid, and so worried the specialist wont know what to do for me.
Like I said my experience has been positive with the research doctors, but the past tends to weigh on my mind
I am tired of being like this, and thought years ago(because it was off and on) that this would never creep into my life again. I am a student at Bellevue University studying to be a wellness coach and have worked hard the last two years to maintain a 75 lb weight loss. I ran my first 5k last year and was going to instruct fitness walk classes this winter. How will I do any of that now??? I dont know if I will be able to maintain my studies because some of the classes include physical movements
The meds i have been on( gabapentin) have put ten lbs on me and probably 5 inches around my waist. I am ashamed of what this monster of an illness has done to me, and try hard every day to walk normal, exercise without falling , and eat healthy, none that works out.
Sometimes I tell myself, this is all in my mind, this isnt real, this can change if I just focus hard and concentrate on being normal. I have even cut down my med does just to see if the meds are making it worse. My vertigo and nauseous has come back, along with more unsteadiness then before Symptoms i had before I started on any medication.
Why? Why do I have to be tortured every day with the fact that this illness has taken over my life, left me afraid, crushed like a nasty bug, and left to do nothing but crawl up in a ball and deteriorate.