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

[crypt0cu1t]

@crypt0cu1t I will be saying a prayer everyday that the approval finally comes through. Is a “peer to peer review” as @Learner1 mentioned part of the appeal process or does that happen after an absolute final denial?

Also, a general question for everyone here. I’m going to try my best to educate myself through the thick brain fog and dizziness over the next month about what my options might be when I see the neuroimmunologist. Obviously IVIG. Plasmapheresis is another. I’ve failed steroids so that is out (unless you guys tell me otherwise — I’ve tried Medrol and Prednisone). I’ve read one or two case studies where they tried certain medications — not Rituximab but others — that look like they are generally used in autoimmune disorders like lupus, RA etc.

Can anyone tell me about the wisdom of using such meds? I just would like to know all the options I have if IVIG isn’t approved or if it’s going to take awhile...and want to be prepared to discuss them with my doc.

What dose of steroids did you use? 25mg has no effect on me.

 

[crypt0cu1t]

Can anyone tell me about the wisdom of using such meds? I just would like to know all the options I have if IVIG isn’t approved or if it’s going to take awhile...and want to be prepared to discuss them with my doc.

Some options for AE treatment include but are not limited to; Steroids, IVIG, Plasmapheresis, Rituxan, Cellcept, Imuran etc..

So far, I've got the most benefit from IVIG, but had serious side effects to it. Plasmapheresis kept me at a stable 7/10 for a whole year.

 

[crypt0cu1t]

My main neurologist is rather on top of my conditions, has been interested in CFS/ME for years and years, so is quite knowledgeable and not willing to turn his back. He fights for his patients.

I'm actually tryijg to get a good neuro on board with my case, would you mind sharing his/her info?

 

[Learner1]

What dose of steroids did you use? 25mg has no effect on me.

25mg of what? I've used hydrocortisone, prednisone, solumedrol, dexamethasone, all at different times. They are very different in strength and half-life.

 

[lenora]

I'm actually tryijg to get a good neuro on board with my case, would you mind sharing his/her info?

Hello @crypt0cu1t.....I would happily share his name except that he has retired b/c of someone with severe neurological problems (if you can believe it!) in his own family. He only keeps a few of his older patients...ones who have been going to him since he started practice). I also have the name of and use another neurologist (who understands the situation with my other neurologist) who is quite good, very respectful and appears to have knowledge of our illnesses. I can supply you with her name if you'd like, but she is located in Far North Dallas. Actually a lot of the younger ones are now in the northern area, so that's not uncommon. I would talk to her first to make certain she understands your/our problem, although I feel she does. I'm in TX out of interest.

I noticed that a lot of steroids make my mind go a little crazy while on them. Although I do feel good; rather like Superwoman, and then the deep dip energy wise once they're stopped. Perhaps you've fared better.


She has either a Nurse Practitioner or perhaps now a Physician's Assistant and I would go through them. She sent a letter saying she was in the process of moving her office. Her name is Dr. Tang. I found her to be very good and, like my retired neurologist, would be familiar with IVIG and probably other treatments. Very smart woman. Yours, Lenora.

 

[lenora]

I don't doubt your diagnosis. The problem is is insurance doesn't pay for treatment for ME/CFS, so it's a lot more productive to use any other ICD-10 code to qualify for treatment. Many of us have 10, 15, 20 or more ICD-10 codes that come in handy when we want to use them for treatment, and running tests...

Glad to hear you're pursuing it. I think the Autoimmune Encephalitis foundation could be very helpful to you. I am ok, thank you.

Sorry, I didn't mean to sound off-putting in my reply. I do understand exactly what you mean by the codes...the way doctors and patients live today, it seems! I'll bear that in mind and have every intention of reading about and contacting the AEF for information. You've been very helpful. All things considered, I feel that I can't really complain about much, either.

You're doing a great job of trying to help people. Thanks so much. Yours, Lenora.

 

[lenora]

100% agree with you re: viruses triggering autoimmunity. I was curious which articles you were referring to and I think I missed them



I bolded the last part of your quote b/c it exactly pertains to me (the nasty conglomeration of oddball antibodies )!



I wasn't suggesting IVIG specifically to you (and I don't know enough about your specific medical situation). But from what I do know, I do think it is worth asking your neurologist about it.



IVIG is not just aimed at people who are young and healthy (like you wrote above) and I have seen IVIG help people who were incredibly ill (both acute situations like Guillain Barre and people who were ill for decades). But it can be contra-indicated & dangerous in certain situations (like someone w/history of blood clots, stroke or heart attack, etc). I also agree with everything you wrote re: having your doctor advocate w/the insurance company and remembering that all conversations are being recorded. IVIG is a challenging treatment medically but I think getting the insurance approval is actually even more challenging.



I am so sorry to hear this @crypt0cu1t and thought that you had insurance approval. Are they saying that it is "not medically necessary" as the excuse for the denial or another reason? Has your doctor filed an appeal?

Hi @crypt0cu1t.....I'm also sorry to hear that you're having insurance problems. Indeed they can leave you feeling like sobbing after dealing with them for any length of time.

Has your Dr. actually talked to anyone who is head of the Dept.? This should be followed up by a letter confirming the conversation and again stating that you need the treatment. Doctors understand that help is often needed by the patient, so you can push on him for this.

I would really hate to see you travel out of state to find someone who could be your advocate. That shouldn't be if he has the info needed. If you're the first patient getting the treatment, then he needs to find out how to go about helping you. Someone in his office can do the work. We live by codes today.

It can take weeks and weeks before things are settled. Some offices prefer that the patients not get involved at all...they're great. But things change from week to week it seems, so you may have to make an in person appearance to actually talk to your Dr. about it. I know you're very ill....tell his office that you're bedridden and see what happens. He may not even be aware that you're constantly denied by the company.

I think one of the reasons you can never talk to the same person more than once is b/c they hope you'll just give up and go away.

What about UCLA, Stanford, places that are easier to get to? I don't know if there are doctors representing the OMF who are doing this type of work...may be worth a call. I don't have any of those phone nos., sorry.
I hope you get help soon. Yours, Lenora.

 

[Hoosierfans]

What dose of steroids did you use? 25mg has no effect on me.

I tried a Medrol dose pack (6 days, starting at 20 tapering to 0) and also Prednisone 60 mg. The Medrol dose pack didn’t do anything for any of my symptoms, but made me more tired and I could feel a worsening of my depresssion about 3 days in. My current neurologist (not the new neuroimmunologist I will see next month), wanted me to try the Prednisone nonetheless and it was nothing short of a disaster. I became suicidal about a week in, so much so that my internist almost hoapitalizaled me for my own safety. To boot, it didn’t touch my symptoms.

So far, I've got the most benefit from IVIG, but had serious side effects to it. Plasmapheresis kept me at a stable 7/10 for a whole year.

. I’ve read a lot of your story, but I don’t recall the plasmapheresis! Why did you stop doing that?

Off to get my skin punch biopsies done. Dedicated hubby is a champ and driving me over 2 hrs each way to my current neurologists office to have it done. Hoping it comes back positive as small fiber neuropathy is one of the DX that my insurance automatically covers IVIG for.

 

[Hoosierfans]

@crypt0cu1t checking in on you! How are things? Any movement in getting your SCIG approved??

 

[lenora]

I've actually been harassing them for 2 weeks every single day haha!

Often that's what it takes....although it seems that you talk to a different person each day. I hope you're keeping track of the name of the person on your calendar and what was being said. The sad fact is that insurance cos.just hope you'll go away and you do them a great favor by not contacting them. Be proactive, but always be polite as I've found you get the most help that way. It's a crummy job for them to be telling needy people "no" or to have an excuse ready. Good luck to you. It's frustration on top of being ill...so unnecessary. Yours, Lenora.

 

[Hoosierfans]

Hey all — my appointment with the neuroimmunologist is tomorrow!! I’m excited and terrified at the same time. I’ve been waiting so long dor this appointment.

And, my skin punch biopsy came back negative a couple of weeks back. I’ve been in touch with my dermatologist to see if he will re-run it for me through Corinthian Labs, which I understand is the gold standard for SFN testing. My neurologist only ordered a biopsy of the sensory nerves, he did not order an evaluation of the autonomic nerves. Corinthian Labs does both.

Will keep y’all posted! Thanks in advance for any good vibes sent my way for the appt tomorrow.

 

[junkcrap50]

Hey all — my appointment with the neuroimmunologist is tomorrow!! I’m excited and terrified at the same time. I’ve been waiting so long dor this appointment.

And, my skin punch biopsy came back negative a couple of weeks back. I’ve been in touch with my dermatologist to see if he will re-run it for me through Corinthian Labs, which I understand is the gold standard for SFN testing. My neurologist only ordered a biopsy of the sensory nerves, he did not order an evaluation of the autonomic nerves. Corinthian Labs does both.

Will keep y’all posted! Thanks in advance for any good vibes sent my way for the appt tomorrow.

What makes Corinthian Labs the gold standard? How did you hear that? (Not doubting, just curious.) From watching Dr. Oaklander's presentations on youtube, it seems like her lab at MGH would be very good. She claims that they have better data to compare to normal/healthy people because SFN varies significantly by age, sex, and ethnicity. "Among all 105 abnormal MGH biopsies from patients under 40 in 2012-2013, the commericial cut off had a 75% false negative diagnosis rate. (Here @15:07

).

Sorry. Don't mean to confuse you and make you second guess yourself & where to send for a second opinion.

 

[minimus]

I had a skin punch biopsy that was sent to Anne Oaklander’s lab at Mass General. See report below. Maybe you can compare it to the report from your dermatologist?

Edit: Having read a bit more online, I now see that the epidermal nerve fiber density - ENFD - reported by Oaklander‘s lab measures the density of sensory small fiber nerves to check for small fiber neuropathy. If the ENFD is low, I guess the assumption is that all small fiber nerves, both sensory and autonomic, have been destroyed. But in some cases of small fiber neuropathy, only autonomic small fibers are affected. To rule out this purely autonomic form of small fiber neuropathy, the additional test that can be run is called the sweat gland nerve fiber density - SGNFD.

 

[Hoosierfans]

Hey @junkcrap50 — thanks for the above. I was not familiar w Dr Oaklander or her lab at Mass Gen. I had just heard from other SFN patients that Corinthian was the “go to” lab to get both small fiber density testing and autonomic nerve testing. From what you posted, it looks like her lab is another great option.

 

[Zebra]

Hi, @Hoosierfans

I've been thinking of you since Tuesday morning and hoping that your neuro-immunology appt went well.

Warmly,
Z

 

[lenora]

I'm actually tryijg to get a good neuro on board with my case, would you mind sharing his/her info?

Hello crypt0cu1t.....I did notice that you and your pretty girlfriend have changed your picture. Good for you! An attractive couple.

If the question about a neurologist was directed to me, I have the bad news of telling you that he is no longer accepting new patients. Besides, we're in Dallas and that's a long way to come for what should be closer to home...any ideas, anyone? Martin may know of someone in CA, and Whitney certainly would as well as many others.

I began with this man when we were both "kids" and now we're at retirement and beyond age. Unfortunately he has severe family problems, so has to disappear at different times. If you're still interested I do have another one that is taking new patients, I use her when the other isn't available, and she is also quite knowledgeable about ME & co. I like her.

Some rheumatologists also have a special interest in this matter. They would be my second choice after a neurologist. As you know, the first visit is the longest and you can really ask questions and have someone write down the answers. If the person is caring can mean so, so much. They'll go the extra mile and, of course, hearing what other patients have to say.

I've always been fortunate in that the doctors I had who couldn't help, at least referred me to someone who could. I started off with an orthopedic specialist b/c I thought it was my old back problems that were resurfacing. Most doctors know if it's a neurology problem, so that's good.

My internist of the time knew nothing, but spent his entire Wed. afternoon at the medical library (and that's what it was then) learning....only to find out that knowledge was comprised of one short sentence. My husband also went and found the same thing.

I'm glad that something is helping you and I hope that insurance won't be too much longer in giving you the OK. It's a true nuisance. Knowing the everything is recorded I can remember my exact words when I was told I had to use a neurosurgeon some 50 miles from here in a remote suburb...."Fine, I'll go, I'll use this person, but if anything goes wrong, I'll hold the company responsible." Within minutes I received a call telling me I could use any neurosurgeon that I wanted. One learns! Sometimes the doctor's office will take the insurance co. on for you....have you asked? Best wishes. Yours, Lenora.

 

[Hoosierfans]

Hi, @Hoosierfans

I've been thinking of you since Tuesday morning and hoping that your neuro-immunology appt went well.

Warmly,
Z

Hey Z,

It did go well. I’m sorry I didn’t update but I’ve been bedridden most of the last 2 weeks with severe symptoms. I’LL try and summarize the appointment!

The doc along w 2 residents who are working with him met with me, my husband and mom for about an hour and a half. He was super thorough and understanding. What came out of the appt:

1. He’s doing some additional testing, including the Mayo Autoimmune Encephalitis Panel. After all of that comes back, he will formulate treatment recommendations.

2. He was VERY concerned with the Anti-Hu antibody that came back positive in December. He said I should have had a full cancer workup when that came back positive as that antibody doesn’t just pop positive for no reason. I’ve had a subsequent test come back negative, but he’s repeating it again just to make sure. IF it comes back positive, he’s sending me for a full cancer workup including a full body PET scan.

3. As for CellTrend and Cunningham, he was concerned with those, while at the same time recognizing the medical validity of them. He was NOT dismissive of them (unlike my autonomic neuro), but rather acknowledged that there are studies that back up those antibodies, and that they can be “indicative” of certain disorders (like POTS), but the difficulty lies in that there are not big, double blind placebo controlled studies that say X antibody = Y disease…such that the FDA had recognized that these antibodies are determinative of a certain disease. And the only reason this is is because these antibodies are new(ish) and there just isn’t research funding behind them.

4. Because of the severity of my symptoms, and #3, he said it absolutely merits a trial of some sort of immunomodulators. Steroids are out given my previous reaction to them. So, once we get the remaining tests back, he’LL decide whether it’s IVIG, PLEX, or a medication like Rituximab. All are on the table right now.

5. We briefly discussed some additional neuro meds we may trial for the burning — he’s had the most success with Tegretol so that maybe the first one we try.

Bottom line is he was super caring, very thorough, and willing to go to bad mat for me for, at least at a minimum, a trial of immunomodulators. He has experience getting IVIG approved, and didn’t seem phased by needing to do some “work” in order to get it for me.

 

[Gingergrrl]

1. He’s doing some additional testing, including the Mayo Autoimmune Encephalitis Panel. After all of that comes back, he will formulate treatment recommendations.

The Mayo Panels are the gold standard (both b/c they are excellent panels and b/c insurance companies take the results more seriously than other labs). I am very glad that your doctor is ordering this for you.

2. He was VERY concerned with the Anti-Hu antibody that came back positive in December. He said I should have had a full cancer workup when that came back positive as that antibody doesn’t just pop positive for no reason. I’ve had a subsequent test come back negative, but he’s repeating it again just to make sure. IF it comes back positive, he’s sending me for a full cancer workup including a full body PET scan.

I totally agree re: re-checking the anti-Hu autoantibody and doing the cancer work-up if it comes back positive.

4. Because of the severity of my symptoms, and #3, he said it absolutely merits a trial of some sort of immunomodulators. Steroids are out given my previous reaction to them. So, once we get the remaining tests back, he’LL decide whether it’s IVIG, PLEX, or a medication like Rituximab. All are on the table right now.

This is excellent news! When I was in your situation in 2016 (although with completely different autoantibodies), PLEX was not an option for me and both of my doctors felt it was too dangerous b/c I was so unstable at that time w/allergic reactions & anaphylaxis. They felt that high dose IVIG was the best starting point and then if I was a responder (which I was), then I would do Rituximab (which I was also a responder). I am so glad that you will have all of these options!

Bottom line is he was super caring, very thorough, and willing to go to bad mat for me for, at least at a minimum, a trial of immunomodulators. He has experience getting IVIG approved, and didn’t seem phased by needing to do some “work” in order to get it for me.

This doctor sounds absolutely amazing and he is a keeper! I had a horrible experience with neurology in 2016 (and saw three neuromuscular specialists at that time) and ultimately gave up that I would find one who could help me. My main doctor felt that it was crucial that I start the IVIG (and I 100% agreed) so we proceeded without a Neuro on board. In the end, it did not matter and I was able to get everything that I needed without a Neuro. But I am so relieved for you that you found a good one! I had a good feeling about your appt but hearing about it has exceeded my expectations! This is really great news.

 

[Pyrrhus]

Related (earlier) discussion:

Officially diagnosed with Autoimmune Encephalitis
https://forums.phoenixrising.me/threads/officially-diagnosed-with-autoimmune-encephalitis.82817/

 

[Hoosierfans]

Hi to all my friends here! I’m very sorry I’ve been absent from the forum (probably for the last 6 months) 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.

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); (3) 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).

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.

Love to all,

Hoosier