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Autoimmune encephalopathy anyone?
Autoimmune Diseases | Last Active: Feb 9, 2022 | Replies (55)Comment receiving replies
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.
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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!