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Looking for answers. No diagnosis yet. What next?

Neuropathy | Last Active: Mar 26, 2022 | Replies (31)

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@parasitemom

My daughter has 8/10 pain in her head and face. But, what is MOST disturbing is the worm-like movements around her mouth-- Under- the -skin- movements that ripple, which she has interpreted as parasites moving around both sides of the face, then going to the brain. Cysticercosis is a tapeworm infection that affects the brain, head, muscle and other tissues. Yes, it is extremely rare at less than 1000 cases per year. She believes to the core this is what she has. 2 Drs. believe her, but are not willing to do the excision to cut them out. Every other Dr thinks she has delusional parasitosis, and thinks she needs to be on anti-psychotics. I am of the opinion that she has these parasites, yet Ivermectin and Albendazole have not gotten rid of these creatures. I am an RN, and am convinced this is what she has had for 2 years. IV Dilaudid given in the ER last week took her head pain from a 10 only to a 5. Her only relief is alcohol, which is so disturbing since she already has a fatty liver. Referrals to neurologists have been denied by at least 4 Drs. Nobody wants to deal with this nightmarish condition. Help!!

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Replies to "My daughter has 8/10 pain in her head and face. But, what is MOST disturbing is..."

I thought I would just add what I KNOW n u can use the info. I’ve had these same symptoms with degeneration in my neck. Nerves compress. My face would contort, sometimes numb. My eye would close n my mouth will turn down like I’m having a stroke. After my neck surgery my fusion broke n I have uncontrolled fascia n muscle twitches n fasculations. It’s small fiber neuropathy from my central nervous system responding like I had an infection. When my second surgery went bad th body reacts. Unfortunately my military surgeon refused to talk or treat me n everything went south. I hope any of this helps you n your daughter. Look up info in th Nat’l Institute of Health too. Exact symptoms n build a timeline. This is how I educated myself.
Prayer n Good Luck