That is limbic

Hello @soccerchick, I think it's difficult when you are looking at rare type health problems like yours and trying to decide what to do. Are you able to get a second opinion? I did find a little information that may be helpful.

Paraneoplastic syndromes of the nervous system - Mayo Clinic website discusses symptomes and possible treatments:
http://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/home/ovc-20315084
Oxford Academic - Brain - A Journal of Neurology articles:

"Paraneoplastic limbic encephalitis: neurological symptoms, immunological findings and tumour association in 50 patients"
https://academic.oup.com/brain/article/123/7/1481/380251#
"Treatment-responsive limbic encephalitis identified by neuropil antibodies: MRI and PET correlates"
https://academic.oup.com/brain/article/128/8/1764/481343
Limbic Encephalitis and Variants: Classification, Diagnosis and Treatment by Erdem Tu¨zu¨n, MD, and Josep Dalmau, MD, PhD:
https://www.researchgate.net/profile/Erdem_Tuezuen/publication/5991390_Limbic_Encephalitis_and_Variants_Classification_Diagnosis_and_Treatment/links/0a85e53bfa4dab60af000000.pdf
John

I am so excited. First of all you have been a saint. I'll never forget your kindness or your name for that matter. This information you have sent is excellent and helps me tremendously. I'm not very good with computers, but you have nailed it on the head and put this into perspective for me. Thank you, thank you, thank you. I told my sister about all the articles I read from the three links that you sent. Very interesting stuff. I cannot believe all of this research that is out there.

I'm am definately going for a second opinion. My neurologist at mayo retired. I liked her. Her specialty was ms but she gave me good advice and really cared. I do feel like I have to start over but at least I have a lot of testing already under my belt that a can share with a new neurologist . My sense of direction is getting worse and I feel like I have to do something now rather than later.

Hi @soccerchick, I'm really glad the information was helpful. If you need to do a search for clinical research and articles a good place to do the search is using Google Scholar - https://scholar.google.com/. You can type in a search term, words or a phrase and it will give you a list of links. Then when you see the results you can use the year links at the left side to organize the search results.

Keep learning as much as you can about your condition. This will help you ask better questions of your doctors and help them help you. Good luck on your journey. Please keep us updated if you can.

John

I appreciate this too and having MULTIPLE Autoimmune diseases and having a source of communication with this community is priceless for getting info, support and help!

Hello @soccerchick,

I'd like to add my welcome to @johnbishop's, and also tell you how glad we are to have you join us.

I found these past discussions on limbic encephalitis in the Brain & Nervous system group on Connect:
– OMG! I feel your pain....we are going through this same thing with: https://connect.mayoclinic.org/discussion/omg-i-feel-your-pain-we-are-going-through-this-same-thing-with/
– Encephalitis of Unknown Origin - treatment resistant: https://connect.mayoclinic.org/discussion/encephalitis-of-unknown-origin-treatment-resistant/

In the meantime, I'm tagging @mamapearl @jemarsh @mlhenderson @mjenkins00, and sincerely hope they will return to share their insights.

I would also encourage you to view this story:
A Mother’s Frightening Fight Against Autoimmune Encephalitis: https://connect.mayoclinic.org/2016/11/15/a-mothers-frightening-fight-against-autoimmune-encephalitis/