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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: 16 hours ago | Replies (77)Comment receiving replies
@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.
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@californiazebra I have to admit I have resorted to just "drinking" most of my meals. As a professional nanny, I've always told parents I will do almost any task for you, except cook. That meant I fed the children, just not the adults. The last family I worked for, I actually lived with. That made it extra difficult to find time for ME to eat. You know the routine for small children after you have cleaned the kitchen. So, I did not eat well for about 5 years. My muscles may have gotten weak IDK. But I had so many operations in the next few years after that period, I was just thinking maybe being intubated exacerbated the problem. (?) I never thought of keeping my head down. I DO consciously try to chew my food to death. I'm sorry we both have this issue. It is miserable when you feel like you are choking.