Ovarian teratoma encephalitis

I read for the first time today, about Ovarian teratoma encephalitis.
Click http://www.nytimes.com/2008/11/09/magazine/09wwln-diagnosis-t.html to view the article.

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Dear Wendystation,

Further to your message, I believe that what you are calling Ovarian Teratoma encephalitis, is in fact what has very recently been termed, Anti-NMDA Receptor Encephalitis by Dr. Dalmau at the University of Pennsylvania, who has been researching this disorder and the who discovered the associated antibodies that attack the brain.

I am attaching the following link which provides further info and refers to an article that will be published in The Lancet December issue.

http://www.neurotodayonline.com/pt/re/neurotoday/fulltext.00132985-20080515 0-00012.htm;jsessionid=JccCtMv5h3GXXMn0TCLL86BqHrZPM57DqnfPgXhsvwznPDzlS2Gl !1285625425!181195628!8091!-1

Sincerely,
Nesrin

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Hello Nesrin!
Please understand that I wasn't "calling it" Ovarian Teratoma encephalitis... I was just quoting the topic from the article I found.
I'm fascinated about your knowledge. How does the topic of encephalitis touch you?

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Good Morning Wendystation,

I am glad that was cleared up, because this is a relatively new form of E., which has only been identified in the past 5 years or so.

My daughter was diagnosed with this back in February of this year. It took about 7 weeks. She started to recover and then had a relapse and she is now back in recovery and going to school part-time. Unfortunately a tumour has yet to be found. It seems that identifying a tumour and removing it is still the best treatment, and patients have fewer relapses.

I immediately responded to your message last night, in order to avoid any confusion. I am sorry if my tone was in any way offensive...it was not my intention. It must be all the fatigue and anxiety that surfaces from time to time.

Should you come across anything else or new, I am always on the lookout for any new developments...

Thank you and have a great day.

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Hi Wendy,

I am pleased to see that when I now do a search for NMDA Receptor Encephalitis your post and another lady's comes up....

Nesrin

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Hello Nesrin...
I certainly was never offended by your words. We're here to help each other understand... and your words here do exactly that. Thank you!
Hugs to your daughter, your family and yourself.

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I am really interested in this new finding. It was said that I had Viral Encephalitis of an "unknown origin". I have always wanted to know how I contracted the virus. In the past year or so I have been dealing with ovarian cists. It is probably nothing but I can check it out and I go to Hospital of Penn so it should be easy.
Thanks!

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You should definitely have those cysts looked at.

All the best.

Nesrin

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Thanks Wendy. Best wishes to you and yours.

Nesrin

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I find this very interesting. Paraneoplastic encephalitis was once "suggested" as a diagnosis for my son, whose encephalitis was termed of "unknown origin". He did have an anti HU that came back negative however, and at that point I just assumed the suggestion was wrong. After reading these articles, I now wonder. Nesrin - what other information do you have regarding this type of encephalitis?

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Dear Joey's mom,

My daughter was diagnosed with Anti-NMDA Receptor encephalitis.

The link below explains the disorder much better than I could and refers to the research which is presently being done by a Doctor at UPenn.

http://www.neurotodayonline.com/pt/re/neurotoday/fulltext.00132985-20080515 0-00012.htm;jsessionid=JpWhZLzGWmQLmxZZ2NzWrtjVHvTpy6Jh6pTzcrNddsHyH80RLT38 !1285625425!181195628!8091!-1

The full article will appear in the December issue of the Lancet.

I hope this helps.

Nesrin

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I had read that article earlier (perhaps it was listed in a previous post of yours), as it was what peaked my interest. I believe the Lancet is one of the publications received at my place of employment so I'll watch for it and discuss this information with my son's neurologist. Of course he wouldn't have had ovarian teratoma encephalitis, but the teratoma could be located elsewhere. What I find most interesting is that I believe teratomas often include extra tooth material and as a youth Joey had a surgery that removed "extra tooth material" from the roof of his mouth. It is just something to think about since his encephalitis remains of unknown origin and has left him with so many life altering side effects (uncontrolled epilepsy for one).

Thank you for your help.

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Good Morning Joey's Mom,
You are right I had sent the article to another member. Although most victims of Anti NMDA Encephalitis are female, there are some that are male and you are right the Teratoma may be found elsewhere.

Good luck with your quest for answers.

Nesrin

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Dear Wendystation,

Further to our conversation, I would like to share with readers who are affected by this type of encephalitis, a source of information that could be useful.

The University of Pennsylvania has now put up their website for patients and caregivers for those affected by paraneoplastic neurological disorders.

Here is the web address: http://www.penncancer.com/pnd/
Thank you.

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Hi all,

I'm new here. My cousin is recovering from Anti-NMDA Receptor Encephalitis and has been on Dr. Dalmau's radar. She was mostly unconscious for 3 months. Suddenly, she woke up one day and ever since then has been regaining her speech, sight, and some cognitive abilities. Despite recovering fairly rapidly over the last two months, she still has not recovered her short term memory, and substantial portions of her long term memory. Additionally, she gets "stuck" in a cycle of questions and appears disconnected from the outside world during those times. She remains confused and remembers nothing from day to day, and minute to minute. Has anyone seen this before? Any thoughts, observations, or questions welcome. Thank you.

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I have long term memory problems except for my childhood. It took me a long time to get my short term memory to be decent. Something I've found to be a big help is that I keep a medical journal that I enter anything that I think is different or matters to any given time. I also enter it by times so I can check and see if different times tend to have different things.

I live in a cycle that I try to stay in so I do tend to completely focus on something until something else gets my focus. Many times that's all I can think of and nothing distracts me from it.

I don't know if this makes sense, but it's how things are for me.

Michelle

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Hi Michelle,

Thank you for your response. It makes complete sense. My cousin is not quite at that point yet, but I hope to be able to someday give her your advice.

Her condition right now is such that she is still in a rehabilitation facility, and we have still have limited moments of "light" each day where she connects with us and the outside world. In the interim, she asks the same series of questions: "What year is it?, How old am I?, Where do I go to school?, What time is it?, What happened to me? ." We'll answer the questions, and she'll react to it sometimes. Yet, within minutes, she's forgotten and returns to her cycle of questions. She also often complains about being "so confused." She recognizes most of our close family members, and some friends. However, she cannot remember that she graduated high school last June, her graduation trip, or starting college in another city. By the way, she started to exhibit symptoms just over a week before she suffered a seizure on her first day of college this past August 2008.

We are, of course, thankful that she is alive and progressing. However, we still wonder about what may present itself ahead. I truly appreciate you sharing your experience and advice. I applaud you on your perseverance in your recovery.

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guatelove - It sounds as if your cousin is taking much the same course my son did. He was 25 in May of 2003 when he became ill. He too asked the same series of questions over and over ( What happened to me? How did I get here? How can I get out of here?). I believe that can be attributed to the extreme disturbance in their memory. Initially, he said I looked like his mother but was sure I was an imposter "sent to get information out of him". After a few weeks, he recognized us, his immediate family and his grandparents but few other people. He can remember some events up to his sophomore year in high school, but everything after that point is gone. He does not remember attending/graduating from college, working, joining the Army or traveling to Kuwait. He was not feeling well the week before he was found having a seizure on his barracks floor. He was also in a coma for a period of time.

He is now almost 31 years old. He no longer is "stuck on the same set of questions". Initially his short term memory lasted only minutes. I'm happy to report it now lasts for up to 2 weeks before he looses those new memories. Sometimes he looses them sooner, especially if he has several seizures. Months of rehabilitation taught him how to use memory aids and of course real life has taught us lots of other "tricks". Sadly his long term memory did not return and he is on several medications and has an implant to help reduce the number of seizures he has. You do not mention seizures other than the one on the first day of college, so perhaps your cousin will fair better than Joey did.

He now lives in a home beside us that has special alarms to alert us when something unusual is happening (including his front and back door opening as he can wander off during one type of seizure he has). While he spends most of his day at our home, when he is at his, we check on him at leat hourly. He cannot cook as it is not a safe activity for him. He has not been able to return to driving (due to the uncontrolled seizures). I am his POA (something someone in your cousin's family may need to be for your cousin at least a period of time), but he handles (with asistance) anything he can. It will be important to your cousin that she regain at least some part of her independence so keep in mind, you want to help her do things rather than do them for her. Don't be surprised if it takes her an extremely extended period of time to do things she normally did quickly and without thinking (such as writing a check, or brushing her teeth). Perhaps though your cousin's initial course seems to closely mirror the one my son had, she will take an entirely different path in her recovery. You can only wait to see. Time will tell how much recovery she gets and how quickly she gets it. Be patient. At 6 years post "E" my son is still getting better, it is just at a snails pace compared to the progress made in the first 2 years.

Just out of curiosity, did any of her doctors ever mention her hippocampus being the most affected area on an MRI scan? That area was the most affected on my son's MRI scans. Since they sound so very similar I was just wondering.....

Vicky

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Hi Vicky,

Thank you for sharing your story with me. I am heartened by your family's story, and humbled by your courage and perseverance.

To answer your question, I am not sure whether the doctors have mentioned her hippocampus being the most affected area of her MRI. Perhaps my aunt and uncle know more (I am always weary of pushing too hard for information given their current low emotional and physical states). However, completing an MRI on my cousin has been and continues to be a daunting task. She does not sit still for more than a few seconds, and she is a very powerful young lady (she played basketball and tennis, and ran cross country, in high school) so we cannot make her sit still even if we wanted. I will see what I can find out, and post with that information.

You also mentioned seizures. You are correct, she is not experiencing seizures anymore. However, she had several seizures a day until the doctors removed the teratoma from her ovaries (so, about 2-3 weeks). She also had a few seizures in the following weeks--albeit smaller ones and less frequently. My understanding is that she has been "seizure free" for since late October.

Vicky, again, thank you for your story.

Best

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Dear Guatelove,

I hope I can write more extensively another time. I just wanted to let you know that my daughter was diagnosed with Anti-NMDA Receptor Encephalitis thanks to Dr. Dalmau's testing in February or March of last year. After approx 3 months she began to recover, including her short-term memory. Unfortunately theTeratomas were never found but she will continue to be scanned on a regular basis. Her long-term memory was not affected. Unfortunately she had a relapse in August and spent another 3 months in the hospital. She is now recovering.

If you have any questions that I can answer for you or any info I can provide that might reassure the parents of this young lady, I would be happy to do so.

Light and love to you all.

Peregrine 1

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Hi Guatelove,

Does your cousin have a get well group on FB?

I have been following the progress of one young lady on her get-well group on FB. You may want to check it out as well. The symptoms you are describing resemble alot those described for this young lady. I may be able to send you the link.

Peregrine 1

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