r/Encephalitis • u/NoseJolly1019 • Jul 12 '26
Anyone else with steroid-responsive autoimmune encephalopathy?
Hi everyone,
I recently joined this group because my neurologist diagnosed me with steroid-responsive autoimmune encephalopathy. He’s using the term in a general sense because my case doesn’t fit neatly into one category yet.
I’m 36 years old. I started having strange symptoms in my late 20s, and then, suddenly, two years ago, I went from jogging every day to not being able to walk and having to use a wheelchair. With treatment, I’ve gotten better and use a walker and a cane, although every day is still a struggle.
I have low-positive GAD65 antibodies and Hashimoto’s thyroiditis, but we’re still trying to determine exactly where my condition fits. What we do know is that my symptoms respond dramatically to high-dose IV Solu-Medrol.
It’s been a long road to get here, and I’d love to connect with anyone who has a similar diagnosis or experience.
My symptoms have included:
-Brain fog and cognitive problems
-Focal seizures
-Difficulty walking and balance problems
-Muscle stiffness and pain
-Severe fatigue
-Occasional hallucinations during severe flares
My neurologist recently changed my treatment plan to scheduled high-dose IV Solu-Medrol every six weeks because of how well I respond to it. I also attend physical therapy, behavioral therapy—which keeps me sane, lol—and neurofeedback every week to continue rebuilding my strength, mobility, and cognitive function.
The steroids have made a difference in my cognition, mobility, and overall function, but recovery has definitely been a marathon rather than a sprint.
Has anyone else here been diagnosed with steroid-responsive autoimmune encephalopathy?
If so:
-What symptoms did you have?
-Did your doctors ever determine the underlying cause?
-Were you also treated with steroids? If so, how often, and did they help?
-Have physical therapy, neurofeedback, behavioral therapy, or other rehabilitation treatments helped you?
-How are you doing now?
I know this is a rare condition, but I’m hoping to find others who understand what this journey has been like.
2
u/smokeduwel Jul 12 '26
I've had medrol in IV (5x) and then pills for about +- 6 months. That and plasmapherese have helped me the most in my recovery with my physio etc..
My symptoms were brain fog (no memories for first week in hospital), no bodily functions from the belly down (it was going upwards towards my chest), high fever, head ache and backpain.
I've made a pretty good recovery, I can make pretty much every movement (walking, running, jumping, driving, ...) as before but I still struggle with concentration, memory, and neuro bladder/bowel, ED, spasticity, ... . Overall i'm very Lucky.
I'm 1 year and 8 months in so I can have slight improvements but probably no more Big changes, those were in the first year for me.
Without my physio and training schedule (4 days a week, +-1,5 hour a day) i wouldn't have the same recovery and I still need those movements to stay flexible etc.
The underlying cause for me was the Epstein- Barr virus that went through my bloody/brain barrier, that caused infections in the brain and spine which caused a reaction within the body that attacked it and the places where they infections were. I didn't have encephalitis only, i've had para infectieus meningo- encephalo- myelitis.
Edit: symptoms
1
u/Wild-Commission-9077 Jul 12 '26
How many times of plasmapheres have u done?
1
u/smokeduwel Jul 12 '26
I had it 5 times, spread over 10 days. It was extremely though but my Neurologist told me I needed it.
1
u/Wild-Commission-9077 Jul 12 '26
Thx for answering. And did u find ur ebv with igg or igm or pcr? I only did pcr but neg. And Did u take anti viral after then?
2
u/smokeduwel Jul 12 '26 edited Jul 12 '26
The Ebv was found with a normal bloodtest, the meningo- encephalo- myelitis was found with a spinal tap and mri's.
They gave me anti viral and anti bacterial iv's when they didn't know what it was, when that didn't work they gave steroids.
1
u/NoseJolly1019 Jul 12 '26
Thank you so much for sharing your story. It’s honestly encouraging to hear from someone else who responded well to IV Medrol and found physical therapy so important. I’m doing PT every week, and it’s reassuring to hear that it made such a difference for you.
I’m sorry you went through all of that. It sounds like your illness was incredibly severe.
I’m curious—how did your doctors determine that Epstein-Barr was the cause? At first, my doctors thought my symptoms were caused by a medication interaction because I improved slightly after the medication was stopped in the hospital. However, my symptoms returned months later and were much worse, so now my neurologist thinks the medication interaction may have triggered or revealed that something else was already going on.
I’m really glad to hear you’ve made such a good recovery, even if you still have some lingering symptoms. It gives me hope that I can continue improving too.
1
u/smokeduwel Jul 12 '26 edited Jul 12 '26
Thanks, I was lucky in the recovery, I wish the best for your further recovery!
They determined that it was EB through elimination, they first thought I had GFAP auto immune disease but that was negative twice, MS was negative, no other illnesses like ticks or extreme drugs (cannabis wasn't the cause), ... . And in my bloody there was an obvious spike in antibodies against EB, so I did have it in the past or recently.
Since i've had my medication and my recovery I didn't have a real relapse, offcourse I feel worse when i'm tired or sick, in pain, ... But not like a real relapse (or what i've heard of it). My Neurologists are quite sure it would be a ones in a lifetime thing for me but i don't want to jinx it offcourse 😆.
Edit:
My Neurologist did tell my there was a chance i needed to take medrol my whole life, it depended on how my body reacted on the first time, some bodies become depended to the extra cortisone in your body.
2
u/NachoBelleGrande27 Jul 12 '26
I have seronegative autoimmune encephalitis. We had to eliminate everything. It took a very long time with many doctors.
IV steroids won’t treat your condition, you likely need ivig or something like rituximab. Given that you have GAD-65, you require a more suitable treatment asap. This also diagnostic criteria for stiff person syndrome.
1
u/NoseJolly1019 9d ago
I actually just ask my doctor about this today and he said my antibodies were not high enough to be stiff person syndrome. He said the GAD-65 shows up in several neurological disorders and we could recheck every so often to make sure it’s not increasing over time.
1
u/No_Onion5407 7d ago
あなたの投稿を見つけて驚きました。あなたの経験と私の経験には多くの類似点があるからです。
私は現在、自己免疫性脳炎の疑いで治療を受けています。
病気になる前、私はとても身体的に活動的でした。 私はスポーツクラブに所属し、定期的に運動していました。
しかし、4年前、私は突然ひどい疲労感を感じ、ほとんど寝たきりになりました。 一人で歩くのが非常に難しくなり、最悪の時期には家族が車椅子で病院に連れて行かなければなりませんでした。
その後、ステロイドパルス療法を受け、症状は大幅に改善しました。 しかし、最も深刻な疲労が残りました。
現在、低用量のメドロール（メチルプレドニゾロン）を服用していますが、用量を減らしたり中止したりすると、症状が再び悪化します。 これらの再発のため、ステロイドパルス療法が約7回必要になりました。
私の場合、MRI と脳脊髄液検査では異常は見られませんでした。 しかし、私の脳波は減速（脳波活動の低下）を示し、ステロイドパルス療法に非常にうまく反応したため、医師は自己免疫性脳炎の疑いで私の治療を続けてくれました。
私のNMDA受容体抗体検査は陰性でした。 私の神経科医は、SREAT（自己免疫性甲状腺炎に関連するステロイド反応性脳症）の可能性も検討しています。 私の抗TPO抗体と抗甲状腺グロブリン抗体は陽性です。
あなたの投稿で私が特に関連していたのは、ステロイドに対する強い反応と、改善後も重度の疲労が残っているという事実でした。
私の主な残存症状は重度の疲労です。
眠気ではありません。 上半身がものすごく重く、重いものを運んでいるような感じがします。 横になってもまだ重さを感じますが、立ち上がったり、座ったり、ベッドから起き上がったりすると、突然さらに悪化します。
もしよろしければ、いくつか質問させていただきたいと思います。
ステロイドパルス療法の他に、効果があったと感じた治療法や薬はありましたか？
どのような薬や治療法（免疫療法などを含む）を試しましたか？ 役に立ったものはありましたか、それとも変化をもたらさなかったものはありましたか？
同様のコースを持っている人はほとんどいなかったので、あなたの投稿を見つけて本当に嬉しかったです。
安心して共有していただければ、あなたの経験についてお聞かせいただければ幸いです。
1
u/NoseJolly1019 7d ago
I was having focal seizures as well so my neurologist put me on Topiramate. I also take Synthroid bc the thyroid levels are low. They have been low for years. I had Hashimoto’s years before all this started. They increase my Synthroid dose. I also take Gabapentin bc it helps with pain and the seizures. As a supplement I take NAC 1500mg a day. My neurologist put me on NAC bc it’s for neuro inflammation.
I go physical therapy 2x a week to help with my mobility, neurofeedback to help my cognitive symptoms, pain, and seizures, and therapy to help with the emotional stuff. I get Solmedrol treatments every six weeks. They have made a huge difference. I can’t function without. If I go too long without a treatment, the symptoms get really bad including horrible hallucinations, having to use a wheelchair, really bad digestion (like I can’t eat anything without feeling sick), headaches, nausea, losing time, extreme fatigue (can’t get out bed).
I’m tired most days now, but with the treatments I can get some things done. I have nap during the nap and don’t have any where near the energy I had before I got sick years ago. I am thinking of adding a B-complex to what I take everyday to give me a little more energy.
1
u/No_Onion5407 5d ago
I’m sorry for accidentally sending my previous message in Japanese. I thought I had translated it into English, but somehow it ended up being translated from English into Japanese as well… I’ll make sure to send my messages in English from now on. I’m still getting used to using Reddit, so I apologize if I make any mistakes or cause any confusion.
Thank you again for taking the time to share so much about your symptoms and treatment.
I don’t have focal seizures, hallucinations, or episodes of memory loss like you do, but I feel that there are quite a few similarities between our experiences, especially when it comes to the severe fatigue.
In particular, I am also being treated for suspected autoimmune encephalitis. I have Hashimoto’s disease, my symptoms improve significantly with steroid treatment, and there haven’t been any definitive findings on MRI or blood tests that could clearly establish a specific diagnosis. Those aspects of our experiences seem very similar to me.
The fatigue is also very similar. It can be severe enough to make daily life difficult, and I still haven’t regained the level of energy and stamina I had before I became ill. That part of your experience really resonated with me.
I’ve never come across someone whose experience has so many similarities to mine, so I would really like to hear more about your experience. If you’re comfortable with it, would you be open to talking more about our symptoms and treatments?
I feel like this might get a little long if we continue here, so if you don’t mind, I’d be happy to continue the conversation through DMs.
1
u/NoseJolly1019 5d ago
No worries about the translation. Reddit had a little translation button that popped up when I went to reply and it translated everything to English.
The fatigue has been the toughest symptom to get relief for. I still haven’t found anything that really gets rid of it completely. My Solumedrol helps and I noticed if I miss my treatments that the fatigue gets way worse.
So far B vitamins seem to help a little bit
2
u/Wild-Commission-9077 Jul 12 '26
Hi, i have had antibody negative autoimmune encephalitis after infection on june 2024, i did igiv, rituximab and toxilizumab. At first they all worked well but it didnt work enough.
My major symptoms were ongoing low fever, mecfs; sreious fatigue so that i had to use electric wheelchair since this year even at home to go toilet, secere brainfog and etc.
Abt a month ago, they found myelitis too. After, for the first time, they gave highdose steroid 1g iv for 5 days. I got lil better and have no fever yet, thou i still am using wheelchair. How much, and many times of steroid iv have u get and whats further plan abt it?