Sarcoidosis

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My journey with sarcoidosis

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.

As you read angel i get one week off a month from infusions. I'm not sure where you heard Remicade does not work for neurosarcoidosis but that and ivig are my saving grace!! You can contact me any time you want and we can lift each other up!! I have a great support team and a wonderful husband! Where do you go for treatments?

Posted 8 years ago by Barbara

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