Connect
What type of encephalitis? Autoimmune, limbic, or encephalopathy?
I was just looking up online about autoimmune disease and the Lord led me to a site Autoimmune encephalitis alliance. Ive been searching since 2014 what happened to me because after i came back from a womens church cruise and my daughter brought over my new granddaughter i was holding her and thank God i gave her back when i did because only thing i can remember is i fell back. And so i had have so many doctors tell me things that just didn't add up to me. So i would ask questions of my family, friends and even other people who saw me fall and when i try to explain things i knew to my doctors they wanted me to think i was crazy. So when i stubbled onto this website everuthing l have been going through others had the same experience where some doctors would just say it was a mental disorder. So a doctor at Duke did some research because she was seeing people were going through the same thing and getting the same response so she has written a book on autoimmune encephalitis. And now they are trying to educate doctors. B ecause instead of a disease they want to clasify it as bioplar, schizophrenia and even some cases as dementia because of the mental reactions. I was just hopping around praising the Lord a long awaited answer. I also found out there are not many doctors who trat this, it seems like only 2 in the mayo clinic but it might be more since they are educating students as well as current doctors. So in 1997 when they diagnosed me with encephalitis and then in 2014 it was autoimmune encephalitis could it be the same but a continual thing? I guess i will have to do some more searching so i can also spread the word and get the help l need before i can't get completely over along horrify journey. Its a disease and not a mental disorder.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Hi @techi,
Thanks for sharing the information. You'd be amazed by the number of diseases humans and animals share – physical as well as mental conditions. In fact, I looked at the vet in disbelief when he told us that Lola, our labradoodle could have OCD, Obsessive Compulsive Disorder, because she has this ritual of going back and forth on just 1-2 stairs before climbing up the entire flight of stairs!!
Diabetes, leaky heart valves (in small dogs), dilated cardiomyopathy (larger dogs), and cancer are some common conditions. Many dogs get lymphomas or even bone cancer. And when dogs or cats get allergies, vets do advise that they can take OTC medications such as Zyrtec, or they might prescribe prednisone. The important thing to keep in mind is to seek the vet's advice before giving your pet any medications.
I'm sorry to hear that your dog may have liver disease; did the vet tell you what the next steps are?
-
Like -
Helpful -
Hug
1 ReactionI have gained over 20 lbs since Iwas diagnosed 6 months ago. I have always watched my weight so carefully and now I can’t lose anything. I am so depressed. My clothes don’t fit and because of my poor memory I don’t remember what I am eating. Any suggestions would be greatly appreciated. I am anRN so I should know these things but my brain has been taken away from me!
-
Like -
Helpful -
Hug
2 ReactionsHi @trish7114,
I'd like to add a warm welcome, and also let you know that I moved your discussion and combined it with this existing discussion on autoimmune encephalitis. I did this so that you can meet the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
@trish7114, could share a few more details? What symptoms led to this diagnosis? Are you taking any medication to manage your symptoms?
-
Like -
Helpful -
Hug
2 ReactionsConfusion,incontinence, the meds are currently solumedrol and Iga
-
Like -
Helpful -
Hug
2 ReactionsThank God l can tell when something is going to happen l was supposed to get my grandson to watch him this week. I told my husband l couldn't watch him. I was right my son came over and asked why is your speech slurred. I said my ammonia level is probably high. Now my doctor has retired and his replacement is supposed to come in September. Isn't that nice? So l had to call the nurse and she has to get as doctor to order the test. Then l have to get there but know one is here to take meSo to get around you have to use a wheelchair. Than God it's not in the garage because there only one doctor who suppose to know about autoimmune encephalitis disease or the encephalopathy. I am so ready to move. This state is so backwards but my husband wants to stay here. I probably won't have from the nurse until 4:30 and the hospital here doesn't know much. It's a shame when a patient has to tell you there's been 2 recalls of the medicine you are taking. You have to be patient and doctor yourself. Thank God l got my memory back.
-
Like -
Helpful -
Hug
1 ReactionHi, @techi -- I moved your message to this existing discussion you helped start on encephalitis because I think you may have a better chance connecting with others who may be familiar with your disease and also your story.
That is a shame that your doctor retired and you feel challenged in getting the response and help you need. Sorry to hear that.
Was your speech slurring the sign that let you know something was going to happen with your autoimmune encephalitis disease or the encephalopathy, or something else?
-
Like -
Helpful -
Hug
1 Reaction@john Bishop I researched an article on WebMd which I like In my 20,s I had mono 1600 blood count for Epstein-Barr virus does Mayo have any info on EBV? This article said it like herpes virus can lay dorment in our bodies Im curious is this virus causing alot of our problems now ,fibromyalgia? Do you have any info from Mayo on this? Thanks Linda
Hi Linda @lioness, I did a search and found the following links:
Mononucleosis and Epstein-Barr: What's the connection?
-- https://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058444
Mononucleosis
-- https://www.mayoclinic.org/diseases-conditions/mononucleosis/symptoms-causes/syc-20350328
Epstein-Barr Virus (EBV) - Mayo Medical Laboratories
-- https://www.mayomedicallaboratories.com/test-catalog/Overview/84421
Google Scholar search results for "EBV Mayo Clinic":
-- https://scholar.google.com/scholar?as_ylo=2018&q=ebv+mayo+clinic&hl=en&as_sdt=1,24&as_vis=1
John
@john Bishop thanks for info I had all the symptoms but I was wondering if her encephalitis ,I dont know what kind she has , could be caused by this and fibromyalgia as far as I know there is still not know a cause?Just fishing Linda
-
Like -
Helpful -
Hug
1 ReactionMy doctor has retired and l had another episode. L called the nurse at the doctor office who retired for 2 days no call back.my husband had to stay home with me for 2days. Yesterday my hepatoligisr nurse knew exactly what was going on. She told my husband my ammonia level were fluctuating and they would call me xifaxin to take. I took it last night l was talking great and was able to go to the bathroom. My son, husband and daughter all called and couldn't understand me. I couldn't get out of the bed and l was vomiting. My daughter said maybe you are dehydrated. I ate in the morning and drank but as far as BM it worked. So l had some soup and water so she said try and take the pill again. I told her no thanks. I looked up the side effects and it said everything l did so are all other prescription side effects and these are some of the symptoms l have been dealing with before expect instead of vomiting l was nauseated so l will have to call again. I hate taking different meds that have side effects that don't go with another med you are taking and l an very careful and read the ingredients because 2 times l got meds from a pharmacy that l was allergic too. And 2 medicines that were recalled. And l was told by a doctor that ammonia levels that are high are different in different states. And also different labs. So they probably give me another med and of course you are fearful of taking one that doesn't agree with you.