Diagnosis Frustrated: How you were diagnosed with NETs?

@nannybb
Nutrition - I'm answering this question separately so others will see it. I can't eat 95% of the food out there due to dysphagia (chewing and swallowing issues from my neuro issue), one breast cancer med gave me afib and anything with tyramine, histamine, caffeine, etc. will trigger afib so that eliminated most of what I could eat. And then there are food allergies, GERD, diabetes, cholesterol, etc. On top of that, a strong neurotoxic antibiotic caused me to lose my taste and smell permanently 9 years ago so I can't taste what I can eat. Eating is a chore for me, no longer enjoyable. It's a social issue too.

Nutritionist - 3 nutritionists really couldn't help me because of my massive restrictions and their limited knowledge, but I just recently started having conversations with Google AI and what a great find! AI is my perfect nutritionist!!! I can eat bread texture so I'm using muffins as my main vehicle for nutrition as physically eating produce is sooo challenging for me. AI created a recipe for me with my requested ingredients, freshly milled flour (super nutritious -- good for gut), oat bran (good for lowering cholesterol and blood sugar), buttermilk (fluffiness), applesauce, banana, mango, spinach, black beans, just enough maple syrup to offset any bitterness. All the ingredients are blended smooth. Friends tried them and couldn't taste the beans or spinach at all. The texture is amazingly moist and soft and so nutritious!

Then I told AI what else I was eating and asked which key nutrients I was still missing in my diet and we went from there and worked out the perfect, albeit limited, healthy diet plan for me. Give AI a try for special diet issues. Best of luck!

@californiazebra Good grief all over again! Are you using a specific AI, or something like Claude? I'm asking because I have gotten a huge amount of info from using specifically Claude. Not sure it matters, my roommate just shared their paid subscription with me. Just one other question, (unusually for me, I know) are you saying you put all of those things in a smoothie? Thanks for your responses!

@californiazebra I know, right? I have had so many body parts altered or removed I'm thinking of changing my name. 🤣

@nannybb
Not smoothies although I guess you could drink it all just the same. When I’m making the muffins, I mix all the wet ingredients in the blender to turn all the fruits and veggies into liquid with the oil, syrup, eggs, before adding to the flour and oat bran so the muffins are smooth not chunky. The oat bran is soaked in the buttermilk to make it soft. Easy to eat for someone with dysphagia.
I’ve just been using the google AI. I just type AI mode in the search field and it brings it up. Free. A friend is using ChatGPT. I can’t compare since I’ve only used the one but it’s amazing. It also knows all about my many rare medical conditions that most doctors do not. Since it’s familiar with all specialties, it can connect the dots that siloed specialists can’t. I keep my medical history (brief overview of conditions, anomalies, genetic mutations, etc.) in a Word doc so I can just copy paste into AI before I ask questions. Saves time.

@nannybb
Not smoothies although I guess you could drink it all just the same. When I’m making the muffins, I mix all the wet ingredients in the blender to turn all the fruits and veggies into liquid with the oil, syrup, eggs, before adding to the flour and oat bran so the muffins are smooth not chunky. The oat bran is soaked in the buttermilk to make it soft. Easy to eat for someone with dysphagia.
I’ve just been using the google AI. I just type AI mode in the search field and it brings it up. Free. A friend is using ChatGPT. I can’t compare since I’ve only used the one but it’s amazing. It also knows all about my many rare medical conditions that most doctors do not. Since it’s familiar with all specialties, it can connect the dots that siloed specialists can’t. I keep my medical history (brief overview of conditions, anomalies, genetic mutations, etc.) in a Word doc so I can just copy paste into AI before I ask questions. Saves time.

How was the dysphagia diagnosed for in your case? For me, I had trouble
swallowing, and it has gotten worse over time. They finally did a barium
swallow. I was actually sitting upright and able to view the pill just
sitting in my throat. They also put a tube down my throat, most likely
looking for an obstruction. IDK
Looking back, I'm realizing I've always had some form of liquid near at
every meal. Is that how they came to that conclusion with you? Same tests?
I'm wondering if being intubated so many times in my life has added to the
problem. Thoughts?

@nannybb
For years I had aspirated on occasion or dry foods stuck in my throat. I had a barium swallow early on that showed premature spillage. Then 11 years ago suddenly I was aspirating food every time I ate. After 50 times in 3 weeks I quit eating and just had a couple protein drinks a day. I lost 25 pounds in a month and went into afib. I thought I had ALS. Had nerve testing, two neurologists ruled out ALS, MS, MG, and determined it was my genetic HNPP causing it (hereditary neuropathy with pressure palsies) and they added with cranial involvement to that dx. My son has HNPP too per genetic test and symptoms. He chokes on food a lot and occasionally aspirates more than I did at his age. I did have another barium swallow but never again as the foods they give you do not represent real life. I have trouble controlling many textures in my mouth and the muscles get super fatigued fast so I can’t eat too much solid food. Foods stick in my throat too. Lots of water. All seen on the tests. I learned to keep my head down when eating for help with gravity as food would slip down my throat before I was ready. Sorry you have issues too.