I’ll try to address each issue mentioned above in 1 post. Sorry for the length. I just hope some part my help a little.

My neurologist is very informed about vitamin deficiencies. He says it’s quite common, but people don’t know to check. It can cause severe and permanent damage if left untreated too long. Even paralysis! That’s why I pray it’s not too late for me. I was initially undertreated. He said when its very low, like under 200, it takes a lot and a long time. He’s not even checking mine right now. The repair takes a long time. I take whatever sublingual that’s on sale at Walgreens. It will be re-tested at some point. He says too much is not a concern.

I asked my ENT about the SG Block and he said no, he would try to avoid that. Not sure why. Apparently, he’s not a fan. My primary suggested scent retraining and I tried that but not regularly. The essential oil kit wasn’t ideal, imo. I couldn’t smell them. I kept trying….real food scents were better for me. Don’t know if they helped or not.

My initial visit to ENT ( scratch and sniff tests. Booklets where you pick the scent by multiple choice. I was frustrated. I didn’t think I got any right. There are probably hundreds of scents like musk, smoke, lime, etc.) My smell was very abnormal. I had no idea. I knew that I had little appetite. I have lost almost 90 pounds since covid! On purpose mostly. But it wasn’t difficult, since my taste was off too. The constant bad taste started metallic, turned bitter. Food tasted ok, but bitter taste was and is constant. He diagnosed me with Post Covid Syndrome and waited on other tests results from neurologist (private office), like MRI (had neuropathy symptoms, but he said no neuropathy). First neuro only said smell/taste issue is tough. That’s it. Found nothing wrong. Didn’t test B12 because I had taken some supplements, but not enough. It was missed.

Then months later, I saw second neuro (Duke) by a fluke! Saved my life. He did extensive review of records, neurological exam, (2 exams that day as his assistant did the tests too). Based on my symptoms and original B12 level, he diagnosed me with deficiency and suspects it has caused me a lot of my symptoms, including the smell/taste, rashes, burning skin, stinging skin, numbness, constipation, hair loss, etc. But, he still wants me evaluated for Sjogrens, so he’s monitoring me as I see the Rheumatologist next week.
All of these current specialists are with Duke.

The doctors don’t know for sure what caused my issues, however, whether it’s B12 or covid dissipation, I have seen improvement!

My return to ENT last month was Incredible! I retook the smell test and my score was dramatically better! I could tell how much better it was. I scored really good. He was shocked! We don’t know why that happened. I could tell my taste is better too, because my weight loss has slowed and I struggle to limit food because it’s so delicious! But, the bitter taste remains 24/7…….☹️

I’m so glad people on this site encouraged me to advocate for myself. I can’t imagine where I’d be if I hadn’t gotten that second opinion from the neurologist at Duke. He talks to me like he cares and I have no doubt he’s giving his all to help me.

Good luck everybody. This is a stressful condition. I’m seeing a therapist. It helps.