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

lenora

Senior Member
Messages
4,913
Good for you....you really did stick with the good fight. That's a lot of new doctors to amass and I'm sure that you'll be making some progress. It's nice to hear and we assume we'll hear from you after the treatments also.

Yes, finding a good doctor can make all of the difference in the world, can't it? Good luck & keep us informed. Thanks for writing. Yours, Lenora.
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
How high is the dose of IVIG in grams per kg?
Also beware that there are people with Dysautonomia that got permanently worse after the stellate block
 

Hoosierfans

Senior Member
Messages
400
We are doing 1.5 g / kg every month, over 2 days. For me that works out to about 85 grams (I’m 55 kilos).

I haven’t heard of anyone w Dysautonomia getting worse — can you point me to that? My doc and I discussed my low BP and POTS and I’m running the procedure by the doc who is in charge of my BP pOTS stuff.
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
We are doing 1.5 g / kg every month, over 2 days. For me that works out to about 85 grams (I’m 55 kilos).

I haven’t heard of anyone w Dysautonomia getting worse — can you point me to that? My doc and I discussed my low BP and POTS and I’m running the procedure by the doc who is in charge of my BP pOTS stuff.
Check out the screenshots posted of Facebook reports in the discord stellate channel

1.5g/kg sounds promising! Wishing you good luck!
 

Hoosierfans

Senior Member
Messages
400
Check out the screenshots posted of Facebook reports in the discord stellate channel

1.5g/kg sounds promising! Wishing you good luck!
Thanks so much. Yeah I’m excited about both things. I’m staying off a lot of social media for awhile as it’s led me down a lot of rabbit holes and self experimenting that probably wasn’t wise. Leaving it up to the professionals now. 👍🏻
I did look at the forum on DINET, and so far no one has reported any worsening. For some it did nothing at all, but no worsening. I’ll leave it to my docs to determine if it’s safe in my case. 👍🏻
 

Gingergrrl

Senior Member
Messages
16,171
Hi to all my friends here! I’m very sorry I’ve been absent from the forum... but a lot has been going on and I took a turn into a VERY dark place after I was basically dismissed by the neuroimmunolgist I saw last summer — saying he really didn’t see evidence of anything and couldn’t do much to help me.

It is great to see you again and thank you for the update! I am so sorry that things took such a dark turn but am very glad to hear that they are now turning around :hug:

I won’t go into all the details of what transpired over the months, but suffice it to say that: (1) I’ve been building a good care team around me (which now consists of a different immunologist, my PCP, a therapist, a psychiatrist, a pain doctor, a vestibular therapist and two new neurologists); (2) I’ll be starting high dose IVIG probably sometime in April (yay

Wow, that is amazing that you found such a great team of doctors and that you will be starting high dose IVIG soon! I did high dose IVIG for 2-years (2016 to 2018) and please let me know if there is anything from my experience that can be helpful.

We are doing 1.5 g / kg every month, over 2 days. For me that works out to about 85 grams (I’m 55 kilos).

I just Googled what 55 kilos equals in pounds and it said it is approx 120 lbs. If this is accurate, then this is exactly what I weighed when I did the IVIG (although sadly I weigh more than this now :().

My dose was very similar to yours and I did 82 grams every 3-weeks except mine had to be divided into a 3-day cycle (vs. a 2-day cycle like yours) b/c I required such a slow infusion speed. I was not able to tolerate a faster infusion speed although most people are and I think I was in the minority. I wish you the best with your upcoming IVIG (and all of your treatment) and please keep us posted!
 

mitoMAN

Senior Member
Messages
625
Location
Germany/Austria
It is great to see you again and thank you for the update! I am so sorry that things took such a dark turn but am very glad to hear that they are now turning around :hug:



Wow, that is amazing that you found such a great team of doctors and that you will be starting high dose IVIG soon! I did high dose IVIG for 2-years (2016 to 2018) and please let me know if there is anything from my experience that can be helpful.



I just Googled what 55 kilos equals in pounds and it said it is approx 120 lbs. If this is accurate, then this is exactly what I weighed when I did the IVIG (although sadly I weigh more than this now :().

My dose was very similar to yours and I did 82 grams every 3-weeks except mine had to be divided into a 3-day cycle (vs. a 2-day cycle like yours) b/c I required such a slow infusion speed. I was not able to tolerate a faster infusion speed although most people are and I think I was in the minority. I wish you the best with your upcoming IVIG (and all of your treatment) and please keep us posted!
How much did the high dose IVIG help you? Did it move you from moderate to mild for example?
 

Zebra

Senior Member
Messages
851
Location
Northern California
Anyway, just wanted to update the thread and check back in on my family. Im very lucky to be alive given what transpired last fall, and im hopeful that these intense treatments will work and I’ll have good news to report.

@Hoosierfans, thank you so much for tagging me! I am grateful to hear from you.

I am devastated to learn that the neuro-immunologist, who initially seemed like a promising ally, turned out to be yet another dead end.

However, it sounds like you have not only overcome your experience with the neuro-immunologist, but you have also built up a new and improved team to support you in making improvements in your health. Good for you! That isn't an easy feat; it takes a lot of persistence.

I wish you the VERY best as you go through the nerve block and begin IVIG.

I look forward to future posts from you, as you are able, of course.

Warmly,
Z
 

Hoosierfans

Senior Member
Messages
400
Thanks all! Yes, @Gingergrrl I’m about 125 lbs. I’m meeting with my immunologist next week so we are going to go over pre meds, meds days of I Iv, post meds and flow rate etc. So I’m sure I’ll have some questions for ya. 🙃

Hi @Zebra ! Yes, it was super disheartening when it went south with the neuroimmunologist who was so promising. It came down to his view that the Celltrend and Cunningham antibodies did not merit “risky” IVIG treatment. I had made a “backup” immunologist appointment with another doc for that September, so when we went to see him he had a VERY different take — Celltrend + Cunningham + inflammatory markers (TGF B and tryptase) + severity of neuro symptoms absolutely merits IVIG…which he considers not risky. We worked through some additional testing with him and then several months of insurance issues, but now we are finally ready to start IVIG. 👍🏻
 

GlassCannonLife

Senior Member
Messages
819
Thanks all! Yes, @Gingergrrl I’m about 125 lbs. I’m meeting with my immunologist next week so we are going to go over pre meds, meds days of I Iv, post meds and flow rate etc. So I’m sure I’ll have some questions for ya. 🙃

Hi @Zebra ! Yes, it was super disheartening when it went south with the neuroimmunologist who was so promising. It came down to his view that the Celltrend and Cunningham antibodies did not merit “risky” IVIG treatment. I had made a “backup” immunologist appointment with another doc for that September, so when we went to see him he had a VERY different take — Celltrend + Cunningham + inflammatory markers (TGF B and tryptase) + severity of neuro symptoms absolutely merits IVIG…which he considers not risky. We worked through some additional testing with him and then several months of insurance issues, but now we are finally ready to start IVIG. 👍🏻

So the doc that seemed really good and ordered the anti-Hu again to double check and was going to do all the testing etc ended up being a dud and dismissing you?
 

Hoosierfans

Senior Member
Messages
400
So the doc that seemed really good and ordered the anti-Hu again to double check and was going to do all the testing etc ended up being a dud and dismissing you?
Yep that’s exactly what happened, he ran a slew of tests, including the Mayo autoimmune encephalitis panel and we did a lumbar puncture, and because all of that came back “clean”, he said there was no reason to trial any immune modulators or IVIG.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Yep that’s exactly what happened, he ran a slew of tests, including the Mayo autoimmune encephalitis panel and we did a lumbar puncture, and because all of that came back “clean”, he said there was no reason to trial any immune modulators or IVIG.
What a jerk. Good that you had the backup appointment, eh?😉 Your second guy makes a lot of sense.

I've just found that some docs are skittish about doing with things they aren't familiar with, as if we patients have to be perfect for them to help us!

Good luck with the IVIG - I've been able to do 55,g in a day, with 500ml saline.

How much did the high dose IVIG help you? Did it move you from moderate to mild for example?
She didn't have ME/CFS. If you read her story, she was tremendously helped by high dose IVIG plus Rituximab. There are several other patients with "bad" antibodies, who have been helped by some combination of IVIG, apharesis, Bortezimib and/or Rituximab. It is a lengthy process, though, not something that fixes things overnight.
 

Hoosierfans

Senior Member
Messages
400
Yea, thank god I kept that second appointment!

About the “lengthy process” — its interesting because under my official diagnosis that got me IVIG, PANDAS, my immunologist said that typically insurance will approve only 1-3 treatments because it’s supposedly works “that fast” for encephalitis and PANDAS. My insurance approved me for 12 (a year) of treatments, which my doc was pleasantly surprised about. We do have to demonstrate some improvement within that year to continue beyond a year…but my doc says that we should see some improvement fairly quickly (although full recovery will take awhile).
 

Gingergrrl

Senior Member
Messages
16,171
How much did the high dose IVIG help you? Did it move you from moderate to mild for example?

@mitoMAN I'm sorry that I missed your question yesterday but thanks @Learner1 for catching it! I don't want to take this thread off track but want to reply in case it is helpful.

Even though I had a great deal of overlap, it ultimately turned out that ME/CFS was not my diagnosis. I was severely ill (unable to walk without wheelchair for 4 yrs, shortness of breath & muscle weakness, constant allergic reactions & anaphylaxis, severe POTS). The high dose IVIG & Rituximab put me into remission but ultimately I had a LEMS diagnosis (not ME/CFS) in addition to Autoimmune POTS, MCAS, Hashimoto's & other endocrine issues.

Thanks all! Yes, @Gingergrrl I’m about 125 lbs. I’m meeting with my immunologist next week so we are going to go over pre meds, meds days of I Iv, post meds and flow rate etc. So I’m sure I’ll have some questions for ya. 🙃

Your immunologist sounds very thorough and I am so glad that you found him/her! And, yes, definitely let me know if you have any questions re: the IVIG at any point :hug:.
 

Rrrr

Senior Member
Messages
1,591
Hi to all my friends here! .... my pain doc, after several tries with different meds is going to be giving me Stellate Ganglion. blocks later this month. The latter I am super excited for, as he’s very experienced with them and has seen them do wonders for those of us stuck in fight or flight constantly. He’s VERY sure it will help with my anxiety and depression, about 50/50 whether it will help with the burning pain, and not sure it will help with the dizziness (no experience there but it might).
Hoosier

Hi @Hoosierfans: This *is* exciting! This is something I'm looking into too. I do not want to hijack this thread, so may I ask more about this in a private message? I just tried to send one. I am not sure if I succeeded.
 
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halcyon

Senior Member
Messages
2,482
Enterovirus testing through Arup labs (Coxsakie B -- positive, Echovirus -- negative)
Out of curiosity (sorry if this is covered in the thread, still working my way through it), do you recall which serotype was positive, what the titer was, and if any repeat determinations were done afterwards to confirm it's still elevated?
 

Gingergrrl

Senior Member
Messages
16,171
I’m meeting with my immunologist next week so we are going to go over pre meds, meds days of I Iv, post meds and flow rate etc. So I’m sure I’ll have some questions for ya. 🙃

@Hoosierfans I was thinking about you and wondering if you had your appt w/the immunologist yet to go over the pre-meds, etc, for IVIG? I'm hoping that your appt went well and that you made a plan and will soon be able to start :thumbsup: :hug:
 

ChookityPop

Senior Member
Messages
583
Very glad you have found out whats the cause and get treatment! I cant read through everything atm. Can I ask which specific tests confirmed autoimmune encephalitis?
 

lenora

Senior Member
Messages
4,913
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