Anti-Dppx Autoimmune Encephalopathy

I have DPPX. I would love to talk to you. Tracy Green

Welcome to Mayo Clinic Connect. Hopefully you will find others who will share their r experiences with you.

@dppxmom @uncledrew It’s great if you want to talk! Please do some talking here on this discussion so that others can learn. Thanks! Also, use the @ sign before the name just like I did. It insures that the correct person will get an email directly! And will save you lots of headaches!
Or, you can use ‘private messages’ especially if you want to share phone numbers or emails. You can find info on using it by clicking on the “new to Mayo Clinic Connect?” This is on the right hand side of this page.
And Welcome to both of you! I can’t believe you found each other so fast! This is a great site and the members are so helpful. I hope you’ll stay with a long time!
How did you find Mayo Connect?

@uncledrew Hi Tracy - sorry it took awhile to get back to you. We posted our questions over a year ago and you are the first to respond. It took a while to find the password and remember how all of this works.

To update you on our daughter's situation, during the summer of 2023 we switched neuro-immunologist, to have continuous medical help for our daughter while her first neuro-immunologist changed practices. The second neuro-immunologist and her team were able to work some pretty incredible magic and secure both her Rituxan and IVIG (Gammagard) through our daughter's insurance. While the Rituxan was bringing her some relief, the Gammagard has been life changing. She had her first loader doses the week of 9/11/23 and even before the five doses were complete we could already see improvement. The insurance continues to approve her medication in six month increments and currently she is approved through August 2024. We have retained both neuro-immunologists to continue to treat our daughter. The second one is now the lead, since she is working with the insurance company to continue the treatments. However, we saw the first neuro-immunologist a week ago and she felt that it might take as much as another year to see a complete recovery. Fingers-crossed the insurance company will continue to approve her treatments. Also to note, our daughter was having symptoms for many months before a proper diagnosis was made. Her health had greatly deteriorated. the diagnosis was made almost immediately when we secured an appointment with her first neuro-immunologist after a regular neurologist had said she needed more specialized care than he could provide. The correct diagnosis was made via a blood test performed at the Mayo. She has never actually been under the care of the Mayo clinic, both of her doctors are in the greater metro area where we reside.

Questions for you. How long did you have symptoms before receiving a diagnosis? Are you receiving a similar treatment plan to our daughter? Same medications or different?

We think it is worth noting here, even if the diagnosis isn't Ant-Dppx Autoimmune Encephalopathy, but a different autoimmune encephalopathy, many of the symptoms are similar, as are the treatments. We are very aware that insurance companies hide behind terms like "investigational" or "experimental", even though these are becoming very proven treatment plans. We hope you are not experiencing problems receiving treatment.

We look forward to hearing from you. You are the only person we have ever spoken to with this very rare diagnosis. Best Wishes.

Thank you so much for getting back to me. I will give you a little back ground. I passed out at home in 2021. Spent a month at Banner hospital, had a rough time, delusional, hallucinating, they released me with a diagnosis of hashimoto. It was a year before I was diagnosed from Mayo. I couldn’t walk, was in a wheelchair for about a year. I am under the care at Mayo, I live in Phoenix. I have had 6 months of steroid infusions, plasma transfers, and 2 years of Rituxan, 3 more years to go. My neurologist is starting me on a medication they give to people for MS. I will have to look it up and let you know what it is. I am so thankful I have connected with you, it’s been a long journey. I still have balance and gait issues as well as memory problems. I am 61 years old, how old is your daughter. I am very fortunate that I have my husband, my mom and dad, my son and daughter in law and grandchildren. My insurance has been very good so far. I would love to talk to your daughter if she is up to it. This disease has really changed the person I used to be,
Looking forward to hearing from you.

@uncledrew Hi Tracy, many things about your experience ring true also with our daughter’s. She also began having issues in 2021. It started in June of 2021 with a form of vertigo called vestibular neuritis, and continually worsened. She started in late 2021 receiving physical therapy for the vestibular neuritis and at first it seemed to help. But by early 2022 her health was deteriorating quickly. She was diagnosed in early 2022 with Hashimoto’s Thyroiditis. While under the care of the neurologist (the one who eventually left her case and left her without a doctor) she had a lumbar puncture and he concluded from that test that she had Hashimoto’s Encephalopathy. (Were you diagnosed with Hashimoto’s Thyroiditis or Encephalopathy?) By the time of the diagnosis and his subsequent leaving of her case it was May of 2022, and she was suffering greatly, both physically and mentally (but to our knowledge she didn’t hallucinate). We met her first neuroimmunologist in late May of 2022 and within two weeks we had the Anti-Dppx diagnosis. First, they tried steroid infusions, and they really didn’t do anything for her. Then in early June of 2022 she was hospitalized for several weeks and given plasmapheresis treatments. They brought her immediate relief, but unfortunately not long-lasting relief. In July of 2022 we began the fight with the insurance company for the Rituxan and IVIG treatments. Eventually a foundation was able to help with the Rituxan. Unfortunately, the IVIG has never been approved by the FDA for many of the autoimmune encephalopathies and therefore foundations cannot supply the IVIG treatments they are considered off-label. She had additional hospitalizations and treatments with the plasmapheresis while trying to get the Rituxan approved and started.
When our daughter was admitted to the hospital in June of 2022, her first hospitalization, she was given the Berg test and was one point from being classified as needing a wheelchair. She was barely able to walk, barely able to communicate, had lost half of her body weight, had no memory and was in constant mental health distress. Prior to her illness she had graduated college summa com laude, received a master’s from Purdue (all A’s) and was working on her private pilot’s license. In less than a year, she was diminished to the point of needing constant care and supervision.
While the Rituxan brought her relief, it is the IVIG treatments that have really turned her life around. She recently completed the Berg test (same one she took in 2022 and almost needed a wheelchair) and received a perfect score. This week she approached the 4-mile mark on walking outside. In the past few weeks, she has started taking the initiative to do physical and cognitive exercises for herself. About two months ago she started using her iPad. She hadn’t touched it in almost two years. She also still struggles with memory and balance issues. She communicates so much better and has relayed to us that she really has very little memory of the past two years. She recently turned 30 and is still uncomfortable interacting with very many people.
We would love to know the name of the medicine your doctor is considering. We would pass it on to her doctors too. We really appreciate your reaching out to us. We feel like there are so many more questions we would like to ask you. It will take a while to digest all this information. This has been a terribly lonely journey. While others sympathize, no one can understand the anguish of this disease unless you are dealing with it. We hope we have answered some of your questions and definitely would like to stay in touch.

Thank you for responding it has been such a struggle and to finally have the opportunity to speak with you, it has been a frustrating and personal lonely journey. I feel like you are talking about me I still have problems being in social settings, sensory overload. It took me a year to unload the dishwasher because of the sound of glass. I also was tested for vertigo before I was hospitalized. I was diagnosed with Hashimoto encephalitis. The name of the medication is Dalfampridine I got it from Mark Cubans pharmacy called Cost Plus Drugs. If I am rambling I am sorry I am so appreciative to have found you. Please ask me anything. Thank you again

A couple more things. When I got out of the hospital I weighed 88 pounds. I have trouble with the sun and lights. Have you ever been told how your daughter got this? I am going to start a research program at Mayo, they are going to put electronic pads on my legs to monitor my gait and balance. It has no benefit for me, they are trying to get information for MS patients. I also got a call from my gastroenterologist and he started during research on DPPX and is having someone contact to do a research paper on me. Where do you live and what are your names?if that is ok. Thank you

@uncledrew @dppxmom If you wish to share names, addresses, phone numbers, please use the Private Messaging. Connect is a public site and we want to protect all members.
To PM, go to the top of this page and click on the ‘person’ drawing. You will then see, on the left, a place to click for private messaging. Let me know if you have any problems.