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Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Heather Smith’s story 


Hi Everyone! Today I thought I would share my story, at least to date. I’m 41. About a year ago I had a gastric bypass and have since lost about 100 pounds. I was the healthiest I had ever been in my life. Happy and really living life for the first time in many, many years. The migraines that had plagued me since my teens were gone. So was the type two diabetes, high cholesterol, etc.

About 3 months after the bypass everything changed. I started getting severe headaches. The kind where you would drop anything in your hands and just grab hold of your head. The kind where you can’t think, can’t eat, can’t do anything but pray the pain would stop. I was seen in the ER on at least 7 occasions. The doctors there just kept saying it was dehydration, the rapid weight loss from my bypass, and/or my migraines. They would not listen to me when I told them this felt nothing like the migraines that I have had all my life.

At the same time, myself and my family began noticing other changes. I was dizzy all the time. Walking in to walls at work, stumbling, and getting tunnel vision. My husband noticed changes in my speech, especially when I was tired. I would stutter, have trouble finding my words, or completely blank out in the middle of a sentence and not remember what I was going to say. Finally, on July 28, 2017, I went in with the worst headache I had ever had. The doctors, tired of seeing me, finally decided to order and MRI. The MRI showed 3 white matter brain lesions; #1 in the right superior parietal lobe, #2 in the left peritoneal region, and #3 in the left temporal parietal lobe. One of the left lesions looks like a MS type lesion, however the other two do not. I was admitted to the hospital and the doctors started looking for a cause.

Over the next 10 days I stayed in the hospital. The headache did not let up. The doctors ordered two different courses of High dose steroids, solumedrol and Depacon. I had no relief from either course. They also did multiple rounds of MRI’s, CT scan, blood work, and a lumbar puncture. The LP was positive for 2 oligoclonal bands. With no idea what was going on, I was discharged on day 10. By this point, I could not walk without assistance. I was prescribed stability crutches. I have rapid weakness, spastic reflexes, fatigue, head pain that is constant around the base of my skull, with multiple episodes of severe stabbing pain all over the crown of skull every day. I am dizzy and have vertigo 24/7. I have increasing difficulties in social situations and public spaces. I have tremors, and spasms that make my whole-body jump. I have insomnia. Bright light, moving lights and colors, and music all increase the head pain. I have stabbing pain behind my eyes that make my vision blur and eyes water. I have nausea and vomiting multiple times a week.

In October the doctors sent an encephalopathy panel to the Mayo Clinic for testing. I am NMDA negative, but positive for N-Type VGCC. This spurred them to do more CT scans to check for cancer. At this point they told me they suspected Autoimmune Encephalitis. The CT showed that I had an ovarian remnant left from a previous surgery as well as two tumors (believed to be endometrioma) on the left side and a small mass in the right abdominal wall. PET scan showed no activity in any of these locations and all masses are believed to be non-cancerous. I have also had a MOG test sent to the Mayo Clinic, but have not received any results from that testing. Currently, we are only treating symptoms. Gabapentin for the tremors and headaches, which does little to nothing. Trazadone to help me sleep, and promethazine for the dizziness. I am undergoing surgery on February 20th to remove the ovarian remnant and all 3 masses. My Endocrine Gynecologist does not believe that the masses are causing any of the Neuro problems. His notes state “Concern by neurology that ovarian remnant or tumor could be secreting a chemical causing her encephalitis. Low suspicion by OB/GYN for the remnant appears to be an endometrioma which are not known to produce these sorts of chemicals or hormones.” However, we are going forward with surgery to rule this aspect of the disease out.

All of my treatment is through the University of Iowa Hospital. I don’t see my Neuro again until a week after surgery. Thanks for sticking with my long story. I just don’t know what to do next or how to proceed. I’ve lost so much to this in the last six months. I’m basically housebound. I cannot drive, I lost my job, and my independence. I’m frustrated and constantly scared. Always waiting for the next bomb to drop.

Heather contacted International Autoimmune Encephalitis Society for help, support, and guidance. She has recently joined the Int’l AE Society Educational Support Group designed for patients with an AE diagnosis and their support people. We will be helping Heather through her journey and guide her in getting the best treatment possible for a best outcome.

72f61a 129d819a6c3e435db2e6354c7e32852b mv2 - Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

First, make a donation to International Autoimmune Encephalitis Society, and provide your mailing address in the transaction. Every donation in the amount of $30 US or more will receive an AE awareness ribbon water bottle with the definition of what autoimmune encephalitis is on the back.a
When you receive your water bottle, e-mail a picture with you using your water bottle with your name and where you are from. All pictures will be posted on World Encephalitis Day, February 22nd.

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.


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A Mother’s struggle

A Mother’s struggle

May 19, 2017

A Mother’s Struggle To have a very sick child must be the ultimate type of despair. Most parents rely on the medical community for help. But what if the medical community can’t help? What if your child is a Zebra?

A Zebra is a rare disease that the medical community is unaware of or does not look for as it’s unexpected. How does a parent proceed? I recently interviewed one of our members who like many others has unfortunately found herself in this situation.

Adwoa Adu and her husband have a son, Ivan who has taken a 3 year rough road to a probable diagnosis of Autoimmune Encephalitis. Adwoa met with the “Don’t look for Zebras in Central Park” phenomenon as Ivan’s chief symptom was seizures. He also had other symptoms and personality changes but the seizures were all the Doctors in Atlanta focused on. So Adwoa did what all good mother advocates do and set out to find out what was really going on. Ivan was having 3-4 seizures daily and was exhibiting personality changes. Adwoa browsed on line until she found a paper on AE. She spoke to the doctors at the pediatric clinic who were still not convinced. Adwoa begged and finally insisted on doing an anti NMDA. Later Adwoa heard about a program at Duke University that diagnose and treat AE.

Ivan finally got IV steroids and was seizure free for 3 weeks and then only 2. He goes back to Duke in June. This story is only partly about Ivan. We all know how our children suffer with AE.

This story is about a mother’s desperate attempt to deal with the medical community in fighting for her son’s life. Unfortunately a familiar story for many of our members who have fought their own battles. What makes Adwoa’s struggle a little more difficult is that she is originally from Ghana in West Africa moving to the USA in the nineties. When i asked her about the differences in health care between the two countries she stated that “i feel in Ghana, they would have looked beyond the seizures to his other symptoms.” Looked for Zebras in other words. So overcoming differences in the medical community was yet another hurdle this mother had to face. Their experience at Duke was very different. Dr. Gallentine took an extensive history, and paid attention to what Adwoa had to say. They return in June to see if it’s time to move to another treatment.

When asked how IAES had helped her after having done so much research herself, Adwoa said ”It’s the accurate information available and the other members, their support and stories” An all too familiar tale and yet with a twist. A parent advocate meeting with resistance from the medical community. A mother desperately fighting for her child. But one who first had to take on the doctors and find the information she needed on her own. This story highlights two vital parts of our lives. First the need for quick intervention by a qualified specialist for suspected AE cases ,which IAES membership can help with. And secondly how much our stories can impact each other. Post your stories on the site you never know who you may help and who may help you, including yourself.

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Fund Raiser wins the Zebra Award

Fund Raiser wins the Zebra Award

May 5, 2017 | Barbara Vujaklija, RN

And the Zebra award goes to…..Michelle Skimmons!

Michelle heard that the Max Challenge Gym in Fairless Hills PA was holding a Day of Giving. A fundraiser for a charity of owner Amy Petrino Potpinka’s choice. So Michelle put on her best persuasive smile and beat out the other charities to have all the proceeds go to non-profit IAES.
The public were invited for free for the day and asked to donate. Gym members were asked to donate $10 each. An astounding $6,800 was raised for our non-profit IAES.
in just one day!
When I spoke to Michelle she told me that Amy gave her the opportunity to spread awareness of AE to the gym staff and to speak about it to each group as they arrived at the gym. Well done Michelle.
When I asked her how it felt to raise over $6,000 for the non-profit IAES.
Michelle stated that it was “wonderful to give back to the non-profit IAES.
group that helps so many people”.
When I questioned Michelle about whether she would attempt another fundraiser and if she had any advice for others thinking about it she said that she would love to do another one but different focusing on raising awareness and that anyone trying to do this should “allow plenty of time especially to explain about AE as it’s still so rare”.Michelle invited anyone thinking about a fundraiser to reach out to her.
On behalf of IAES I would like to thank the Max Challenge Gym and all who participated and of course Michelle for all her hard work.

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The evolution of science

The evolution of science


March 29, 2017 | Barbara Vujaklija, RN

Blog March Magnets in the form of lodestones have been used to supposedly improve health since the ancient Greeks. Again in the middle ages they are mentioned in healers texts. During the 18th century Doctor Franz Anton Mesmer held parties in his Paris saloon and by using a weak electromagnetic field convincing people he was healing minor ailments. His ‘show’ often had young ladies fainting and became the basis for mesmerising or hypnotism. Magnets as healing agents had a resurgence in the mid 1900s. Magnetic jewelry was supposed to restore balance to the body’s fluids. Later after work on the atomic level proved that electricity and magnetism are different aspects of the same phenomena and further research in recent years has shown that at high levels could help to heal bones. Electromagnetic therapy if not mainstream medicine is being used in some cases of stubborn bone healing. However that does not mean that gloves, braces and socks etc with weak magnets in them are going to do you any good. They are just that ‘too weak’. There is no scientific evidence that weak magnets have any effect on the body. The same is true for Copper by the way and limited diets, unless you have an allergy to a certain food, can be downright dangerous. Depriving yourself of one type of substance can cause imbalances in the body. I use these examples to show how the scientific process is followed in treatment protocols. Let’s take AE for example. Following the scientific process doctors would first make observations about how patients respond to different drugs. Next they would form a hypothesis that a certain drug worked better than others. After establishing that a drug has worked on a number of patients experimentation would start by broadening the number of patients given the drug. After the results of the experiment are analyzed a conclusion is drawn that the drug in question does in fact work. The hypotheses must then be tested and if the results are repeated the medication becomes part of that treatment protocol. Electromagnetism followed The same path. The point of this ramble is to remind everyone and inform new members that the treatment protocol for AE has been through this process and is considered scientific fact. In other words it usually works. As the disease progresses and changes so to must the treatment keep pace. Again scientific observations tell the doctors which direction to take the treatment. Observations include how the patient presents, what symptoms persist, whether the disease is progressing and if so how aggressively, or if it is remitting. Data that by this time has usually been collected also guides our scientist Physician. The type of antibody if known is important as is where the disease process is. At every stage the proven science leads the way to a successful outcome. Around the world researches continue to use the scientific method to increase our knowledge and provide better treatments. Each knowledgeable physician working with an AE patient is following the scientific method to adapt treatments to respond to individual patients. Barbara Vujaklija, RN

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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