New Diagnosis and New Docs: Autoimmune Encephalitis, SFN and a Neuroimmunologist

[hapl808]

fortunately I had two epileptic seizures while in the ER

Totally understand, but a sad state for us (and maybe medicine) when we all nod and think, "That's so lucky!"

 

[ChookityPop]

I had autoimmune encephalitis approx. 2 years ago. It was hard to detect b/c I also had two different types of epilepsy and multiple other problems.

The first time I had the test, I was in a coma. This was verified by the Mayo Panel Test and indeed, I did have autoimmune encephalitis.

A few weeks later I was readmitted.....have no memory of the details, and was once again given the test. This is a spinal tap....and while it was uncomfortable, you couldn't exactly call it painful. (Warning: If you have bad knees, see if it can be performed in the side position). I can't complain about the test itself....especially in comparison to one I had 30 or so years prior. Today local anesthetic is used. Just make sure that you follow directions about your position afterwards.

I was treated and yes, treatment consists of multiple tests, antibiotics given IV and interviews by neuropsychiatrists. (4 times, as I recall). The latter is done to help confirm the portion of the brain affected....and this is important. I consider myself fortunate, but I do have some problems with memory that didn't exist beforehand. Some people are more negatively affected.

Two years doesn't seem like such a long time, but I live in a large city, had access to excellent medical care and still had problems with doctors trying very hard to understand it. How did I get it? Where did it come from? At that time there was so little information.....today it's better, but just as unknown for the most part. How long did I have encephalitis?....(the present thinking is that it's started with E. and then goes into A.E.). Who knows I was one sick chick, OK, hen, at age 75.

I've had no recurrence. To the best of my knowledge the Mayo Panel is still considered "the test." I did have faulty vision in my l. eye that quickly moved to the r. (vision problems were going on for probably a few wks.), and then one morning I simply couldn't walk on one leg....fortunately I had two epileptic seizures while in the ER, both witnessed by doctors or I'd probably still be looking for answers. I also have two different types of epilepsy and have to take drugs for them, or I quickly slip into seizures. This was all new to me.

Hope this helps. I haven't had a recurrence since....and hope the same will remain true. Yours, Lenora

Thanks for sharing! Im so sorry you went through this but Its good to hear that you feel better!!

Can I ask how it was hard to detect the AE due to Epilepsy? I also have some form of Epilepsy (not diagnosed though). I had the most intense seizure the night before I got sick in 2014. Had felt tired etc for a while but after that I was super brainfoggy and out of it. I felt so inflamed in my brain and it felt like someone had scratched the top of my brain with a dry hard old towel, that describes it perfectly! I actually got the same burning senzation in my brain when I relapsed in 2019... Wonder how my PET scan would look like (never had one). Maybe I should get one done privately even though it costs a fortune..

 

[lenora]

Hello @ChookityPop. I didn't even know I had epilepsy let alone two different types. I had seizures in the ER and doctors were present....that was just plain luck. Two different types yet and I'm still on medication for both of them (and fatigue doesn't even begin to describe one of the side-effects, if it is the meds).

The AE was determined via the spinal tap (non-medical term). The Mayo Panel determined whether or not I actually had AE and since I did, treatment proceeded. A lot of IV's.

I don't know to this day why the second spinal tap was performed.....I believe I had a relapse of the AE and this time just the spinal tap and other tests were performed. I would think there shouldn't be any trouble in determining if you have AE if you have the Mayo Test. I did not need a neuropscyhiatrist the second time around and I'm still on the meds for epilepsy.

My neurologist recently died and I was hoping to slowly taper off some of those meds, but the fact is that I do continue to fall, often with no memory whatsoever and if I'm honest have to say that it's probably a very fast seizure. I'll be seeing the new doctor next week or so. I'll miss my old neurologist horribly....but!

Check with your doctor and find out which test will give the most information. Also, you don't have to pay the full rate for a test....go to the accounting dept. and you should get a reduction. There is no point in asking the doctor b/c they simply don't know the code info that is needed. The chances of epilepsy do increase with age (and I have no idea of yours). I guess I'm a walking example. Yours, Lenora

 

[lenora]

Totally understand, but a sad state for us (and maybe medicine) when we all nod and think, "That's so lucky!"

Hello @hapl808......Some things are just so difficult to diagnose. Unless someone actually sees a seizure in progress, makes note of what's happening and how long it is, even the best doctor in the world wouldn't be able to tell a seizure unless an accompanying person could describe it.

Tests would still have to be done, no question of that.

I hope to get off some of this medication as I wrote above, but whether or not I actually do, is up to the new doctor. Each time we have a seizure we run the risk of it affecting the brain in a negative way. So yes, I do consider myself "lucky" that the doctors were there....especially with two types of seizures.

Who knows how long these had been going on? I certainly don't know nor does my husband. My first sign should have been when I fell in the garden while standing on a half-buried step....I broke my wrist and had to have surgery. Then it seemed that one thing after the other occurred and I have no memory of a good many of them. I'm just fortunate that I was near good medical care.

I really hope you're never faced with these "unknowns" (as if so much of it isn't unknown). Some day, though. I've been OK for about two years now....don't drive, have had more falls some not remembered and even I can't put this puzzle together. It's difficult. I hope you're doing OK, if not better than that. Yours, Lenora