October 31, 2018 | Kim Kennedy-Raley, RN
Hi everyone, my name is Kim Raley and I was diagnosed with Hashimoto’s Encephalitis in July of 2018 although my symptoms were present for years before diagnosis. I am 53 years old, I love the Lord, I’m a parent to 3 children and now have 6 grandchildren. I am a registered nurse and have been for 20 years. I worked in a rural hospital as a Charge Nurse on medical surgical floor that had patients from 3 days old to my oldest patient being 106. I had spent my life taking care of patients with every disease and condition within all ages of life. That’s what I did, that’s who I was.
Boy was life fixing to change for me. In my later 40’s I started having an odd array of symptoms of anxiety, severe fatigue, joint pain and swelling and cognitive problems that took an intermittent course. Well, I would go to the Doctor and tell him a new symptom, he would do blood work which would come back normal. So, he would treat the symptom. He would tell me I was working too much, that I needed to get rid of stress in my life, work out and I was getting older, so things were not going to feel the same as when I was younger. As a nurse, 12-hour shifts would turn into 14, patient nurse ratio was high and by now I was in my later 40’s so with the ole brain not working as well as it did I thought I was going through menopause. My life went on and I kept going.
During the Summer of 2015 I was coming out of the town court house that I have spent my life in and when I walked outside I didn’t know where I was. I knew I was in my town on my town square, but I could not connect my thoughts. I walked around that square looking at buildings that I had seen my whole life and they didn’t make sense. I was terrified. I finally made it to my car and drove home crying all the way. Something had happened to me and I didn’t know what. I called my daughters and they came over and I was fine at that point, so I brushed it off, but it always stayed in the back of my mind and I would tell the physicians I worked with about it and they would say I just had too many things on my mind. Too much on my plate. So here I went again doing my thing.
In January of 2015 I got an upper respiratory infection and was treated with antibiotics. Two weeks later I discovered that I had lost the hearing in my right ear. I went to ENT and was diagnosed with sudden deafness. I had missed the window of time where treating with steroids could help. I was told that there was a 50/50 chance my hearing would return. I was shocked. The treating doctor told me to google it to find out more. Over that Summer my hearing did seem to improve somewhat. The ringing in my ear had subsided. So, I simply picked up and carried on with life again.
In March of 2016 I got strep and flu b at the same time and was very sick for several weeks. Then about the time I thought I was over that I was at work and, suddenly, I started having severe vertigo attacks. I ended up in the hospital on 2 separate occasions, but I continued to work as soon as I would get relief until the day when no relief came. Again, I was at work and my world turned upside down and I lost the hearing in my right ear completely. I was sent to ENT again and was subsequently diagnosed with Meniere’s Disease and underwent a chemical labrythecotomy over the next few months to destroy my vestibular nerve to stop the vertigo. I spent much of my time so sick in bed at this time I couldn’t even think. When the vertigo subsided I then had to deal with relearning balance, adjusting to bouncing vision and my brain just would not cooperate. I asked the ENT for physical therapy to help me walk again and he said that he wouldn’t give me that as he wouldn’t be following my care. I was shocked. If he wasn’t following my care, then who was? I turned to my family Doctor for help and he ordered vestibular therapy. During that summer I walked on trails, hiked on uneven ground and just did everything I could to regain my strength and balance.
By this time, I was no longer working. I had to navigate the disability system and come to terms with the idea that I may never be the same as I was prior to my illness. My life was forever changed but I didn’t realize how much until Sept of 2016. Over a period of weeks my brain decided it wasn’t going to work for me. I had difficulty with speech, I couldn’t carry on a fluid conversation, I could not complete a task I started. Attempting to try to organize 12 pieces of paper for my Doctor took me an hour and a half to no avail. I had an appointment scheduled to see my primary Doctor for this and waited for a month and a half just to be told in his waiting room that because I no longer had my own insurance and was now on state insurance he would not be seeing me. At this point I already had convinced myself that I was crazy, and I was so desperate because I knew I really wasn’t. There was something wrong with me and I was going to die if someone didn’t do something. I stood my ground and I refused to leave his office. I told the staff that someone was going to see me that day or come out and tell me to my face that after all of these years, when I was really sick, the doctor was not going to see me. I was told that I could come back in 2 hours and see the nurse practitioner. I was so shocked and disappointed, and I couldn’t believe that people would treat their patients like that. I know I was hysterical in his office and now all I can do is laugh about it. I think back on that day and what a site I was! But I was going to be seen! So, the nurse practitioner referred me to a neurologist which took another month. I had EEG, MRI, CT ultrasound of thyroid and lab work and barely made it to the day that I would see him to get the results.
Well the Circus continued. My daughter who is a clinical psychologist went with me to this appointment for which we waited 4 hours to be seen and the neurologist came in and gave me a short memory exam and then asked me how long had I been having problems with my memory. I looked at my daughter and then he lifted his hand and said, ” This is an easy question”, and started ticking off his fingers while saying, 10 years, nine years, eight years, etc., until he got down to months. I thought it was some kind of memory test or that he was insane. I looked at my daughter again and she shrugged her shoulders and bowed her head as if to say, ‘I’m with you!’. I finally blurted out 10 years just to make him stop! Now remember, my brains not working my ears are ringing, my vision is bobbing, and I was having terrible flooding from the MRI sounds I had just previously done! It was bananas! I asked him what my labs showed and told him about the Meniere’s and he yelled! “It is not Meniere’s”! So, I said OK then what did he think. He said my TPO was elevated and I had thyroiditis and he thought I had Hashimoto’s Encephalitis. I asked him about my MRI results and he said come with me and I’ll show you! He took me out to the desk and told the receptionist to make me an appointment for a neurologist in Louisville and make sure I had a copy of the disc to take with me. Then he turned to me and said, we are done you may go. He stuck his head in to the room where my daughter was and said you can go now. It was like we were on candid camera waiting for the guy to jump out and say it! Unfortunately, we were not and that was it.
Well, we cried and cried the whole hour home and instead of taking me home my daughter drove me to her Drs office and told me we were going in! I said no I can’t, I can’t hardly walk. I was so fatigued I could barely talk. I just wanted to go home and go to sleep. She said you’re not and in we went. After seeing his scheduled patients, he walked into the waiting room; having not seen me for several months he was shocked. I worked with him on the floor at my hospital and he couldn’t believe the shape I was in. He said; You have something, and we are going to try this. He wrote me a prescription for prednisone 50 mgs and made me an appointment for the next week. I took 2 doses of the steroids and by the third day my mind was back, I could walk with little problem and I could bend over in the bathtub and wash my own hair! I could only cry for days! I knew I was trapped in this body with this brain that wasn’t working but I sure didn’t know how far I had gone down until the prednisone kicked in! It was a miracle.
I made it to the appointment with my daughter’s Doctor (who has sense became my Doctor), and made an appointment with a new neurologist in a new town. I was ready to go! I continued the steroids and went to the appointment. We were ready to find out what it was! I had all my medical records, meds list, labs history and physicals, imaging discs. Literally, everything! Every instance, test and diagnosis that lead up to this point was going to mean something. After going over my medical history, he got out my MRI and said even though it showed only white matter changes that he could see frontal lobe shrinkage and that I had frontotemporal dementia. That is a death sentence within 2 to 5 years and he recommended that I get my affairs in order. His recommendation was that he refer me to Mayo Clinic to get the best care. I was horrified but this time I knew he was wrong! Steroids would have not made that big of a difference in that short of a time. If indeed it was frontotemporal dementia.
I didn’t freak out, unlike my daughter. I was numb but processing. The office was going to call me with the appointment at Mayo and we would go from there. In the meantime, the doctor scheduled me for a neuropsych evaluation. We called the office, a week later, and were told they had left a message with yet another physician who would do the neuro psyche testing. But they had not heard back. So, I waited another week and called the office again, only to be told they had sent another message but still hadn’t heard back. Then, I ask them for the name and number of the Dr stating I would try to get in touch with them myself. As it turned out the number they gave me was someone’s home address and this sweet little man said “Miss, I don’t know who keeps giving out my number, but there is no one here by that name. This is my home.” I thanked him and called the office to let them know. Their response: “Well, that’s why no one ever called us back.” Needless to say, we were on the search for our own neuropsych tester, and in the process, found out the original Doctor they were trying to schedule an appointment with had retired a month prior. The neurologist’s office did let me know, yet another month later, that Mayo would not except “Passport,” as it was state insurance. However, they did schedule an appointment for me with a neurologist at University of Kentucky. I continued daily oral steroids until I saw him.
I arrived for my initial consult with him armed with all my medical records including my recent neuropsych evaluation. He diagnosed me with Hashimoto’s Encephalopathy and set me up with Rheumatology at University of Kentucky. They adjusted my steroids and placed me on Imuran with the assurance that if this did not work then we would move to Cellcept or IVIG.
I have just finished a month of 60 mgs of prednisone daily and a month of an increased dose of 150mg of Imuran. I will continue to see if it works. They are going to taper me slowly off prednisone once the Imuran has time to take effect at the full dose.
I still struggle day to day with brain fog, ringing in my ears, and sensory overload, but I am learning how to live with this disease and except its challenges. And, I am trying to find the good in this. It has allowed me to reestablish who I am, and I have a lot more time to spend with God who is my strength. I take it day by day and, so far, I have had just enough Grace for every day. I am hopeful yet realistic in that this is a long row to hoe not a short one. The lessons I have learned that I would like to share and can’t express their importance enough are: Gather your medical information together. Rely on family support. Follow your instincts. Be your own advocate. Make your own doctor appointments and always request to be placed on their cancellation list. Most importantly: Never give up! There will be a day when patients will not have to fight like this! Maybe, in part, through us patients and through the work on wonderful organizations like International Autoimmune Encephalitis Society
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.
Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.