Chronic Illness and Mast Cells

Starting the Year Off With a Bang; More Neurological Symptoms and Twelfth Cranial Nerve Palsy

Some how I made it through the holidays. I went to two family get-togethers despite worsening neurological symptoms and swellings. My angioedema is out of control. And it’s being complicated over the Zantac (ranitidine) “recall”. So far, I’ve not found another H2 blocker that works as well. I had no idea just how much the ranitidine was helping me until I tried switching to Pepcid (famotidine). (If you don’t know about the concern with unsafe levels of NDMA being found in ranitidine you can find more information on the FDA’s website here: https://www.fda.gov/drugs/drug-safety-and-availability/fda-updates-and-press-announcements-ndma-zantac-ranitidine. Most pharmacies and stores have pulled ranitidine off the shelves, but you can still get it with a doctor’s prescription. However, you may find your insurance will no longer cover it which is what I found out the last time I tried to get a refill.) I’ve had unexplainable neurological symptoms since at least 2012 which was the year my health went to hell in a hand basket. Then in 2015 things peaked and became worse again. I’ve tried finding help to no avail. I’ve seen 2 neurologists as an outpatient, one of which was at the Mayo Clinic, and still no answers. I’m waiting to hear from my EEG I had last week. MRI has shown nothing abnormal. Beginning of January, my PCP diagnosed me with Twelfth Cranial Nerve Palsy. And no idea as to what has caused it. I think it has something to do with the severe out of control swelling, but hey, what do I know?. I’ve only been living with these symptoms for near a decade with no answers. I read a little bit about it. Sounds kind of scary. Makes me want to bury my head in the sand. I’m waiting on a referral to a new neurologist, and I’m less than thrilled about it. Denial seems easier at this point than acceptance. I’m also angry. Very, very angry because I have tried to seek help for these symptoms for years and it fell on deaf ears. Even complained about difficulty swallowing and my tongue feeling weird. Now it has come to the point where I have nerve damage. Maybe it would have been avoidable if my symptoms had been taken seriously when they started years ago. No words…

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