Autoimmune encephalopathy anyone?

I FINALLY got a IVIG infusion appointment for encecephlogy (or however one spells it!). My symptoms are back & I hope I can hold out for yet another week before I have total breakdown & end up in the E.R. full of Covid patients..

@mermaid7272 I’m so glad you finally have an appointment. It’s for next week, right. What day? You CAN hold out. Do you have any near-by friends? Ask one of them to quietly sit with you, just so that you know that you’re not alone. I did this several times before i was diagnosed and it helped. I was finally diagnosed and started on prednisone.
Does your PCP know about what you are going through? If not, please tell them! He/she may want you to stay in the hospital for a few days before the MRI. It is safe, nurses are great at infection control! That’s a much better option than going to the ER. Do you live alone? If so, do you have a friend or neighbor who can check in on you?

Intravenous Immunoglobulin (IVIG) infusion therapy or immune globulin infusion is used to treat individuals with antibodies or immune deficiency. IVIG infusion can be given through the vein (intravenously) or under the skin (subcutaneously). Immune globulins are specific proteins produced by body cells called plasma cells.

What I am having is not an MRI, it is what is indicated above-- an IVIG . Prednisone was giving to me in that terrible hospital, it sent me into a coma.
We are not allowed visitors because of all the Covid patients, but I will be in an infusion center-- less chance of unvaccinated patients.
My partner can bring me & take me home. He has been a great help to me.

I just hope that the serious symptoms hold off until my infusion. My dr. is trying to figure out what is causing my brain problems!!!!

I have had lots of this in reverse of you..eventually MS, 50 years ago, have added 4 more autoimmune diseases since then. I always said it...whatever ‘’it’’i is at the time, has to catch me first, so just keep moving forward, do what you can every day, and never give in. Eat and sleep well every day, no matter what, but don’t ever be over fatigued!

Don't know where else to list this. No one is paying much attention to ME/CFS. There are millions of us around whose lives have been destroyed by
the disease. Exercise isn't the answer. It's the most common answer you receive. However, there is something termed post exertional malaise. Seems most doctors pay no attention to this. If you exercise, you feel ill the next day. Doctors are looking for a marker. That's a definite marker. Why not do
collection of blood tests the day after exercise has been assigned. Covid is terrible. The emphasis is now on this. Please picture the person who has both Covid and ME/CFS. Also, why not do similar tests on Covid and ME/CFS people. Something might just pop up. Instead, those of us who have ME/CFS are just pushed into the background as usual. Medical people, you're missing something. Be creative. Care about everyone . Listen with two ears. Look with two eyes. Help us. We've been around for over 40 years or even more. Thanks for starting to remember.

I have just had 2 rounds a month apart (4 days) of IVIG therapy for my Autoimmune encephalopathy, still no relief. I was very ill after the last round--- felt like a hangover. The doctor still has not figured out what has caused my condition.
I was in a nice, professional infusion center this time for these rounds. Kind nurses, but little information was known about this condition. Those of us who suffer from this are lab rats.
Exercise? How can one even think of that when one can barely walk? I can't even walk in a straight line!
Going to a place like the Mayo Clinic is not possible, money-wise, or physically.

Never commented before on "connect " but here goes. I live in the northeast. ...When I was about 60 I started to have memory problems, gait issues and noticed a slight tremor in my fingers. I thought I was developing Alzheimer's so I went to a doctor and he ordered a brain scan. Nothing showed up and he just assumed I was just stressed out because I was older, in a job that could be somewhat stressful and also required some overtime on different shifts. My memory started to get much worse and started to affect my job. Could no longer work. I saw several doctors but no one thought there was anything wrong with me. I was finally referred to a neurologist but had a long wait for an appointment. While waiting I started having more lapses in my memory. My husband, sisters and some of my children noticed that sometimes I could not remember what I had done a few hours before and started speaking jibberish. I even fell off a chair I had been sitting on. At night I had many involuntary muscle spasms that would wake me. When I was at my worse my husband took me to a hospital ...but they did some tests and sent me home without any diagnoses. The very next day I had a grand mal seizure and was brought back to the hospital in a coma. This time they did a spinal tap and found wbc's and abnormal proteins in my spinal fluid. I also had a brain scan. I was suspected to have Lyme disease or Creutfeld-Jacob disease. I was finally diagnosed with Hashimoto's Encephalopathy and treated with intravenous methyprednislone and depakene. Within a short while after my initial intravenous, I was back to myself
but I remember nothing of the previous week. I returned to work a month later and continued taking oral medication including Levothyroxine and having brain scans for a few years. It has been many years since and because of the neurologist's quick diagnosis I do not appear to have any side effects. Do have a few autoimmune issues but nothing huge. So, I hope those with these issues persist with the medical community to get the correct diagnoses and treatment. Do try centers like Mayo Clinic and John's Hopkins which are more likely to understand. Get friends and family to help if you can. Having a disease dismissed because the doctor does not believe it is real is sad ..........I wish you good luck!

Unfortunately fascinating story. My symptoms are not as bad. However, every so often another develops. Because I look fairly well, little attention is
paid unless I choose to make an issue of the symptom. I feel like a pest. However, I suspect those of us with ME/CFS have felt like pests for years. I suspect some sort of autoimmune cluster if such a thing exists. The high Epstein Barr Titer just has to mean something. It makes no sense for physicians to tell most patients, everyone walks around with that titer. Glad you're feeling better and could return to work. I could not. But then, that's life. But then, this is the Mayo Clinic, it would be wonderful if several times a year, physicians read these connects. I suspect they'll discover lots of
information here.

@drdash, welcome. Your story gives hope. Thank you. You mentioned that you continued taking oral medication including Levothyroxine. Are you still on medications? How is your condition managed now? Any relapses or precautions that you have to take?

I was on the steroids for only a few years/ after a few months the amount was slowly lowered to a very small amount. Most people don't need the steroids that long but I kept feeling that my symptoms were returning so I continues for a while on a very low dose. Once my brain scans returned to normal I was taken off the Depakene (seizure med). I was started on levothyroxine right after my diagnosis of HE even though my thyroid results were not bad. I am now on it for life because I have Hashimoto's Thyroiditis/ or hypothyroidism. It is an autoimmune disease but I do not have a lot of problems with it. My life returned to normal soon after. I had one episode where I felt I was having a relapse. Doctor
did not think it was really that but put me back on steroids. I was off of it in few months and that was about 10 years ago.