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Autoimmune encephalopathy anyone?
Searching for a diagnosis!!! I am looking for others who may be having similar experiences as I am. I have been diagnosed with Hashimoto Thyroiditis for many many years now. I take levothyroxine, which seems to keep my thyroid in check. However, about 5 years ago I began having neurological symptoms; gait issues, off and on memory loss, concentration issues, tremors, seizure like episodes, stroke like symptoms, severe muscle cramping (dystonia?), word finding problems....the list goes on and on. These symptoms come and go, usually made worse by stress or being tired. All diagnostic tests I have had come back normal, eeg, emg, blood work including various antibody screenings, MRI's, cardio sonograms, EXCEPT for low but normal memory screening and very high TPO and TGab levels. I was given 1 5-day treatment of IV 1000 mg Solu-medrol which turned me into a brand new person!!! I felt great for several months but my symptoms are returning now. My current Neurologist has now referred me to a Neuro immunologist. This will be my 5th Neurologist in 5 years!! I am so nervous that I will be dismissed after I actually had something work for me. I have been dismissed by many many drs through this. All the things I have learned seem to point to Hashimoto Encephalopathy, HE, SREAT, AE....whatever you want to call it. BUT I have found many people in the medical field don't believe in this diagnosis! Any help, pointers, suggestions, or support out there? Is there anyone experiencing similar things?
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I was on oral meds methylprednisone and depakene for a few years. I was started on levothyroxine after my diagnosis and contunue taking it. I have Hashimoto's thyoditis so I will take the thyroid med for life. A few years after being taken off the steroid for HE I felt I was relapsing. My doctor didn't think so, but put me back on methylprednisone for a short while.
When I hadn't had any seizures and my brain scans appeared normal I was taken off Depakene. It has been over 10 years since my original diagnosis and I feel that I have no side effects .......thanks in good part to a quick diagnosis and treatment. My former neurologist told me he was certain that I would not have any relspses .......ever.
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1 ReactionFunny, we have several similarities in our disease of brain "problems" (An understatement!)I had my thyroid removed several years ago, but it is under control. i had a tumor, but I do not have Hashimoto's.
I am on levothyroxine, & will be forever. While in the hospital for a critical episode of Encephalopathy,
I was given a dose of steroids which nearly killed me
Then they gave me IVIG, which set me straight! I have to take it every month till this terrible disease goes away. The drs. still have no idea of the cause of my Encephalopathy,
Good luck to all of us.
@mermaid7272 I, too, have Liss Encephalopathy. There seems to be no certain path for this stuff, but all the markers say I have it. My guess is that it is my myeloma (Gelsolin) and my LGMD2m. There are not enough of us with 2m to be sure, but it fits the known pattern. (NIK says there are Nine on earth with 2m. And there seems to be some divided opinion whether it mutates from Gelsolin or the GSN mutates from the LGMD2m. Oh, well. It seems that any who have GSN or LGMD2m are eventually diagnosed with the other. Anyone have a Ouija board? oldkarl
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1 ReactionMy simplistic understanding of He or SREAT, or whatever they call it, is that it is autoimmune in nature. The body sees the brain as a foreign substance and reacts by attatcking it with T-cells (lymphocytes) which causes the brain to swell. Why/how the T-cells permeate the blood-brain barrier is unknown, and, as with all autoimmune diseases, what triggers the body to attack itself is complicated and has genetic causes.
What symptoms do you have during one of your "attacks"?
Mine are a myriad of symptoms. Headaches, burning sensation in mouth & throat, and even tongue. tremors, usually in hands, forgetfulness and loss of simple words. Recently, a final insult- loss of hair!
My initial attack, in late October & November, which threw me into a hospital full of Covid patients and overworked and under-trained medical staff, was severe speech impairment, then loss of speech, complete loss of balance, and loss of common sense. The tremors and a coma followed up with horrific hallucinations.
I am now on a monthly regiment of IVIG.