May have undiagnosed autoimmune disease

What is DPPX? Please educate us.

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.

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!

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.

I am not sure what blood test it is. I was in the hospital at Banner for a month, they sent my blood work to Mayo.
Mayo indicated that I had DPPX, Banner didn’t know what it was, they released me saying I has Hashimotos (sp)
I finally got with a MS doctor that sent me to Mayo, my neurologist knew exactly what was wrong. I am fortunate that I live in Arizona and have Mayo here. If there is any thing else I can help you with let me know.

I would also, will it really help??

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.

What is pernicious anemia?
I have had mold illness for years now and lots and lots of tests, bloodwork etc. My last 2 reports months apart showed that I have very low iron and lots of ferritin that is supposed to carry the iron to all my organs. The doctor is baffled and says I have anemia but I really have no symptoms. Any thoughts?

For me it was detected through a stomach biopsy. I have antibodies to cells that create intrinsic factor and also antibodies to intrinsic factor. And all my cels are gone that produce it. Without intrinsic factor you cannot move b12 into your blood stream. Without b12 you can die in 5 years unless you inject. If you inject enough you have a normal life. You can not overdose. Every cell in your body needs 12. without it your nerves deteriorate first. Doctors don’t usually know much about it but it probably affects way more people especially old than are ever tested. The normal b12 blood tests are only 50% accurate- so basically useless. There is a great facebook group with 60000 members. I learned a lot about it in Rotterdam at a b12 convention. One doctor there said if the test are useless why don’t we inject everyone who has symptoms with b12 every other day and see if they get better in 6 weeks since it can’t hurt. But the protocols are old and there is not enough research so they don’t have the power to try it. But you can. Hope you feel better soon.

My husband has seen several doctors also and can find nothing specific. He has many of the same symptoms. The doctor also said it is probably long COVID.