My journey with sarcoidosis

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I was diagnosed with sarcoidosis of the lungs 11yrs ago after having my son. None of the meds worked (except steroids) but you can't stay on them forever. I was on a lung transplant list than they approved Remicade for sarcoidosis. Tried it and it worked for the past 8 yrs. I was (normal) again!! I have stage 4 severe sarcoidosis. No chance of remission. But the Remicade worked. Just two weeks before thanksgiving, I was rushed to the hospital due to total sudden deafness in my left ear and loud ringing. On the floor vertigo and none stop vomiting. I was a hot mess!! The ER had no clue what was wrong. I went to a ENT dr he looked at my MEI and said the nerve in your ear connected to your brain is "dissolved" this is out of my scope you need a Neurologist specialist in sarcoidosis. So, long story short, I'm one of the 1.4% of people with Neuro sarcoidosis. Still in the test faze and I'm on steroids. Just had a spinal. I'm still 100% deaf in left ear. Slowly getting my balance back and thinking clearly again. And eating and drinking. When this happened I had no signal from the brain to eat or drink I lost 20 pounds in two weeks! That's all back now the wanting to eat. When this first happened I also lost two weeks of memory and didn't know my family's names. All that came back thank god!! That's where I'm at now.