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May have undiagnosed autoimmune disease
Autoimmune Diseases | Last Active: Aug 18 2:09pm | Replies (30)Comment receiving replies
It is an auto immune disease. Dipeptidyl-pepidase-like protein 6 (DPPX) antibody associated encephalitis is a rare
Syndrome that includes weight loss, painful gastrointestinal symptoms, cognitive dysfunction and CNS hyperexcitabilty. I am on my 3rd year. It took about a year to get a diagnosis. It has been a long journey. I started out doing steroid infusions, then plasma transfers. I am now having rituxim infusions every 6 months for 3 more years. I just started driving 3 months ago. I continue to have balance problems, memory problems, one day at a time.
Thank you for asking.
Replies to "It is an auto immune disease. Dipeptidyl-pepidase-like protein 6 (DPPX) antibody associated encephalitis is a rare..."
Is there a specific blood test for this? You mention “bloodwork”. I wonder if you know specifically what was tested.
I’ve had so many blood tests and generally it comes out normal or near normal. I’d sure like my doctor to test for DPPX. My symptoms are very similar to what you mention.
Have you tried b12 shots? I self inject every other day. It might help with some of your symptoms: fatigue , muscle and joint pain, soreness in mouth, and tongue, pulsation all over body were also symptoms I had from pernicious anemia.
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I’m impressed that you got a diagnosis for something so rare in just a year! The autoimmune disease list just keeps growing! I’m surprised autoimmune diseases aren’t a medical specialty aside from the system based specialties like neuro, rheuma, etc. I am just starting Rituxan infusions for CIDP, and it seems like the indications for Rituxan are growing and widespread. Good luck with your treatment and I hope you get significant improvement!