Learn with me. Let's increase our knowledge of autoimmune causes of neurological symptoms. To gain tools to get the care we need.

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Antibodies (so far):
vgkc, ganglioside gm1 igg, anti tubulin with elevated cam kinase, ts hds, ana 1:180 fine speckled pattern​
Conditions associated with these antibodies:
undecided. Pending further investigation. Seeing two specialists soon, the head of the neuromuscular department at university, that specializes in determining types of neuropathies. And another neurologist at university, that specializes in autoimmune encephalitis including PANS and PANDAS which happened to me (pans, maybe the subset pandas) at 17​

Previous to getting these results, my interpretation I came to recently was that I got infectious encephalopayhy and/or post infectious autoimmune encephalopathy, perhaps different pathologies from different times (17, then 8 years ago, and perhaps 6 years ago). This is because of what I've learned on PR and my research based on it, and from going over my symptoms onsets throughout my illness as i wrote them down recently. A new doctor I just saw, an ME doctor, before I got these results, agreed and on a note wrote (our first appointment) among his other notes "She has very clear and long history of neuropsych/neuroimmune illness and given her infection history and specific sx, I am very suspicious of PANS like illness, post infectious autoimmune encephalopathy." We were awaiting these results from panels I requested getting a few weeks prior (from a different doctor) to see how to proceed. He also just ordered me a couple more antibody tests based on the antibodies that were identified. Early sjogrens panel (negative for sjogrens so this might be different or it's a repeat), antiphospholipid syndrome diagnostic panel, dnase b antibody, and antistreptolysin o.​

Vgck and anti tubulin (with elevated cam kinase) will be investigated to see the role they may have played and be playing (I don't know when I got them), in autoimmune encephalopathy and anything else.
I will post my symptom onsets throughout the course of my illness that I have a list of, as a blog post so that people can reference the antibodies showing positive and compare with their symptoms. But it doesn't mean that the antibodies I have now are the same ones that may have been present with the possible autoimmune encephalopathy onsets in the past, or that I have all of the ones I may have had in the past (I have a suspicion I had more) especially since I've had lots of improvement in some neurological symptoms but still a ton across the board. So take any comparisons you make between your symptoms onsets, and my past and current symptoms onsets, with a grain of salt. I mean take it with a lot of grains. Antibodies have various presentations in symptoms.​

Previous to getting these results I also suspected my neuropathy symptoms and autonomic dysfunction as having autoimmune causes, because they got worse and new symptoms (burning in feet legs arms hands) starting from when I got vaccinated, along with much worse pem, much more intense and oppressive weakness, muscle burning with use starting over the course of following weeks and turning into when just laying there, new pain, that only increased in the month and a half since then, until I had intervention. That is why I requested the sensory motor neuropathy panel and the celltrend sfn panel as two of the panels.​

Ganglioside gm1 igg, possibly vgkc, and ts hds need investigation for the role they may be playing in my neuropathy symptoms, autonomic dysfunction, weakness, pem, and anything else.
What investigation has already been done so far for neuropathy is that a skin nerve biopsy didn't show a low enough fiber density to be considered as indicative of small fiber neuropathy. As it says on the report it does not rule it out (one reason being that nerve fibers could be decreasing over time in a way that's not explained by age, and happening because of small fiber neuropathy, but not low enough yet to be clearly indicating sfn with the established standards. It's not individualized. And you wouldn't know if you have no previous sample to compare it to. I learned this from anne louise oaklander the harvard researcher doing a lot for small fiber neuropathy). But there was another finding in the biopsy that could be causing autonomic dysfunction and it's not an autoimmune finding but research is saying the reason for this thing might be autoimmune too. I had no and almost no sweat response on a sweat response test. Now I need to investigate other types of neuropathies. Nerve studies and possibly a deeper nerve biopsy. Even if the skin nerve biopsy had low enough density to be considered small fiber neuropathy, I would've still investigated other types of neuropathies, especially because the ganglioside gm1 igg is associated with other types of neuropathy.​

What investigation did you do that led to finding those antibodies?:
Autoimmune neurology panel from quest (vgkc), sensory motor neuropathy panel from quest (ganglioside gm1 igg), cunningham panel (anti tubulin and elevated cam kinase), celltrend (ts hds)​

Type of treatment:
undecided. 3 weeks ago I did immunotherapy (ivig) as an interim measure because I was going downhill fast.​

Helpful?:
Yes, very. At about 1 and a half weeks after, a normal response time, I began to recover my strength, oppressive painful weight more than I've ever felt lifted to a more tolerable and familar place, muscle burning with most use and when just laying there reduced to very little, still some non muscle burning in feet and legs comes and goes, ongoing pem from just small movements stopped and is now having fluctuations but at a much different threshold (that's why I think maybe there's antibodies involved in some of the presentation of my pem), oi is better, aching and new pain stopped. Not right away, over the course of a week and a half. I'm still much worse than before the vaccine but the difference from a week and a half ago is huge and I'm incredibly relieved.​

I'm singing which was hard for me during that time. It was the most debilitated I've ever been, I've never come anywhere close to that before, one day 2 weeks ago it was difficult for me to hold my spoon, and I was planning on going to a facility to be taken care of because I don't have a caregiver yet and I'm in the middle of getting one. And I had no way to reduce pem from going to the bathroom and eating and on top of being in need and almost being unable at the rate I was going, I knew the more I got pem without help the more likely I was to get worse to the point where I had no choice. Thankfully cognitive capacity wasn't affected in all this. I am also having much more sleep impairment still.​
I can feel today more feet and leg burning, and some muscle burning in arms and hands from use like holding my phone, and now I'm thinking that maybe they are the same pathology. I was thinking this before but it got so muscular when it was at it's worst that I thought maybe this is a different pathology. Now that they're starting back up together, I'm not sure. I had an involuntary muscle twitch today and those are associated with vgkc. I used to them get a long time ago randomly. I'm sure my little sleep is not helping. It's time for more immunotherapy. I did about .45g/kg 3 weeks ago instead of 1g/kg because of cost since it's not set up with insurance yet and I'm hoping to get reimbursed for that. So I need some more. That was an emergency measure to halt the progress. It will have to be decided whether I should wait the 3 more weeks to get a csf sample before doing my next infusions if approval can be gotten that soon or whether that's only blood you have to wait. And whether I should submit now or wait until I have more definitive neuropathy types so that the treatment gets started for multiple things at once in case that'll make it smoother to have it continuous for as long as I need it. Depends when I can see the specialists and if it'll be at least a month, I'll submit with what can be said now from the antibodies and clinical symptoms, while I investigate. And hope that it's a smooth process to "add things on" to what immunotherapy is for. Maybe it's better to see them when I'm worse although you don't know what kind of progressions you're gambling when you delay treatment. So I'll find out these things and get some advice and make some decisions.​
I'm going through my process about insurance and timing and investigation, because these are important things for people to hear from others about what the process might look like and what kinds of things need to be tested in different situations beyond just the antibodies in the blood.​
 

Learner1

Senior Member
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Location
Pacific Northwest
Antibodies (so far):
vgkc, ganglioside gm1 igg, anti tubulin with elevated cam kinase, ts hds, ana 1:180 fine speckled pattern​
Conditions associated with these antibodies:
undecided. Pending further investigation. Seeing two specialists soon, the head of the neuromuscular department at university, that specializes in determining types of neuropathies. And another neurologist at university, that specializes in autoimmune encephalitis including PANS and PANDAS which happened to me (pans, maybe the subset pandas) at 17​

Previous to getting these results, my interpretation I came to recently was that I got infectious encephalopayhy and/or post infectious autoimmune encephalopathy, perhaps different pathologies from different times (17, then 8 years ago, and perhaps 6 years ago). This is because of what I've learned on PR and my research based on it, and from going over my symptoms onsets throughout my illness as i wrote them down recently. A new doctor I just saw, an ME doctor, before I got these results, agreed and on a note wrote (our first appointment) among his other notes "She has very clear and long history of neuropsych/neuroimmune illness and given her infection history and specific sx, I am very suspicious of PANS like illness, post infectious autoimmune encephalopathy." We were awaiting these results from panels I requested getting a few weeks prior (from a different doctor) to see how to proceed. He also just ordered me a couple more antibody tests based on the antibodies that were identified. Early sjogrens panel (negative for sjogrens so this might be different or it's a repeat), antiphospholipid syndrome diagnostic panel, dnase b antibody, and antistreptolysin o.​

Vgck and anti tubulin (with elevated cam kinase) will be investigated to see the role they may have played and be playing (I don't know when I got them), in autoimmune encephalopathy and anything else.
I will post my symptom onsets throughout the course of my illness that I have a list of, as a blog post so that people can reference the antibodies showing positive and compare with their symptoms. But it doesn't mean that the antibodies I have now are the same ones that may have been present with the possible autoimmune encephalopathy onsets in the past, or that I have all of the ones I may have had in the past (I have a suspicion I had more) especially since I've had lots of improvement in some neurological symptoms but still a ton across the board. So take any comparisons you make between your symptoms onsets, and my past and current symptoms onsets, with a grain of salt. I mean take it with a lot of grains. Antibodies have various presentations in symptoms.​

Previous to getting these results I also suspected my neuropathy symptoms and autonomic dysfunction as having autoimmune causes, because they got worse and new symptoms (burning in feet legs arms hands) starting from when I got vaccinated, along with much worse pem, much more intense and oppressive weakness, muscle burning with use starting over the course of following weeks and turning into when just laying there, new pain, that only increased in the month and a half since then, until I had intervention. That is why I requested the sensory motor neuropathy panel and the celltrend sfn panel as two of the panels.​

Ganglioside gm1 igg, possibly vgkc, and ts hds need investigation for the role they may be playing in my neuropathy symptoms, autonomic dysfunction, weakness, pem, and anything else.
What investigation has already been done so far for neuropathy is that a skin nerve biopsy didn't show a low enough fiber density to be considered as indicative of small fiber neuropathy. As it says on the report it does not rule it out (one reason being that nerve fibers could be decreasing over time in a way that's not explained by age, and happening because of small fiber neuropathy, but not low enough yet to be clearly indicating sfn with the established standards. It's not individualized. And you wouldn't know if you have no previous sample to compare it to. I learned this from anne louise oaklander the harvard researcher doing a lot for small fiber neuropathy). But there was another finding in the biopsy that could be causing autonomic dysfunction and it's not an autoimmune finding but research is saying the reason for this thing might be autoimmune too. I had no and almost no sweat response on a sweat response test. Now I need to investigate other types of neuropathies. Nerve studies and possibly a deeper nerve biopsy. Even if the skin nerve biopsy had low enough density to be considered small fiber neuropathy, I would've still investigated other types of neuropathies, especially because the ganglioside gm1 igg is associated with other types of neuropathy.​

What investigation did you do that led to finding those antibodies?:
Autoimmune neurology panel from quest (vgkc), sensory motor neuropathy panel from quest (ganglioside gm1 igg), cunningham panel (anti tubulin and elevated cam kinase), celltrend (ts hds)​

Type of treatment:
undecided. 3 weeks ago I did immunotherapy (ivig) as an interim measure because I was going downhill fast.​

Helpful?:
Yes, very. At about 1 and a half weeks after, a normal response time, I began to recover my strength, oppressive painful weight more than I've ever felt lifted to a more tolerable and familar place, muscle burning with most use and when just laying there reduced to very little, still some non muscle burning in feet and legs comes and goes, ongoing pem from just small movements stopped and is now having fluctuations but at a much different threshold (that's why I think maybe there's antibodies involved in some of the presentation of my pem), oi is better, aching and new pain stopped. Not right away, over the course of a week and a half. I'm still much worse than before the vaccine but the difference from a week and a half ago is huge and I'm incredibly relieved.​

I'm singing which was hard for me during that time. It was the most debilitated I've ever been, I've never come anywhere close to that before, one day 2 weeks ago it was difficult for me to hold my spoon, and I was planning on going to a facility to be taken care of because I don't have a caregiver yet and I'm in the middle of getting one. And I had no way to reduce pem from going to the bathroom and eating and on top of being in need and almost being unable at the rate I was going, I knew the more I got pem without help the more likely I was to get worse to the point where I had no choice. Thankfully cognitive capacity wasn't affected in all this. I am also having much more sleep impairment still.​
I can feel today more feet and leg burning, and some muscle burning in arms and hands from use like holding my phone, and now I'm thinking that maybe they are the same pathology. I was thinking this before but it got so muscular when it was at it's worst that I thought maybe this is a different pathology. Now that they're starting back up together, I'm not sure. I had an involuntary muscle twitch today and those are associated with vgkc. I used to them get a long time ago randomly. I'm sure my little sleep is not helping. It's time for more immunotherapy. I did about .45g/kg 3 weeks ago instead of 1g/kg because of cost since it's not set up with insurance yet and I'm hoping to get reimbursed for that. So I need some more. That was an emergency measure to halt the progress. It will have to be decided whether I should wait the 3 more weeks to get a csf sample before doing my next infusions if approval can be gotten that soon or whether that's only blood you have to wait. And whether I should submit now or wait until I have more definitive neuropathy types so that the treatment gets started for multiple things at once in case that'll make it smoother to have it continuous for as long as I need it. Depends when I can see the specialists and if it'll be at least a month, I'll submit with what can be said now from the antibodies and clinical symptoms, while I investigate. And hope that it's a smooth process to "add things on" to what immunotherapy is for. Maybe it's better to see them when I'm worse although you don't know what kind of progressions you're gambling when you delay treatment. So I'll find out these things and get some advice and make some decisions.​
I'm going through my process about insurance and timing and investigation, because these are important things for people to hear from others about what the process might look like and what kinds of things need to be tested in different situations beyond just the antibodies in the blood.​
Once you get IV immunoglobulins, testing for antibodies doesn't work, because the rest will just tell you what antibodies the donors had, which can be anything.

It sounds like you have a lot of information to make your case for insurance. It helps if you can review what the policy is for getting IVIG and see if you have anything that qualifies. If not, it will probably take you doctor setting up a "peer to peer" consult with the medical director, where the doctor explains your situation and why the treatment is needed. If you do gave something that is within policy, then whoever will be delivering the treatment would submit the doctors order with your duagnosis codes for approval. (A hospital or home infusion company like OptionCare, Coram/CVS, or a local service).
 
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That's why I said wait another 3 weeks. To make 6 weeks. The minimum time when you should be testing again. The guidelines for this vary a little. I was curious about whether csf is the same.
Thanks. They will do that. I'll talk over my options with them. It's more about that it may be a smoother ride for longevity for being able to stay on treatments if I have a few well-defined conditions up front rather than adding them on as I investigate more. For example, if some of my symptoms attributed to the first condition I put in a claim for get better in a certain amount of time but others attributed to other conditions I add on are taking much longer, will I be able to obtain continuation? And other immunotherapy with these things all split up? Just bureucratic nonsensicle stuff I'm trying to protect myself from. I'm just speculating and will find out soon. Plus case management nurses at the insurance company and patient advocates can be relied on to assist if anything goes wrong.

For immune mediated neuropathy treatment, doing nerve studies to determine type of neuropathy is necessary for insurance except if it's one that nerve studies aren't relevant such as small fiber neuropathy (don't know of any others). But having ganglioside gm1 igg and symptoms of neuropathy may be enough to begin immune mediated neuropathy treatment. I will follow up later and share what was required. Thanks for your help :)
 

Learner1

Senior Member
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Location
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That's why I said wait another 3 weeks. To make 6 weeks. The minimum time when you should be testing again. The guidelines for this vary a little. I was curious about whether csf is the same.
I've had doctors do antibody testing after I was on IVIG and it gave false results. I found this in a study:

"Hemolysis and false positive serologic test results are sometimes unexpected consequences of IVIg therapy [14, 15]. False positives may occur as a result of reactivity of the plasma donor IgG proteins to the test reagents [16]. Interpretation of such results should be done with caution [13]. It is recommended to avoid serological testing in patients undergoing IVIg therapy.

Following the therapy, it is possible, if not likely, that continued false-positive results will occur for several days and perhaps weeks, and will vary as a function of the status of IgG half-life. This will be influenced by several factors including both the IgG donor and recipient patient profiles, as well as issues pertaining to storage/stability, and manufacturer preparation constitution (e.g. proprietary additives).

Clinicians should carefully consult the prescribing information on IVIg therapy documentation, which clearly warns about the potential for misinterpretation for serological testing as well as other interferences (e.g. direct or indirect antiglobulin tests), which is regular clinical practice."

It's more about that it may be a smoother ride for longevity for being able to stay on treatments if I have a few well-defined conditions up front rather than adding them on as I investigate more. For example, if some of my symptoms attributed to the first condition I put in a claim for get better in a certain amount of time but others attributed to other conditions I add on are taking much longer, will I be able to obtain continuation? And other immunotherapy with these things all split up? Just bureucratic nonsensicle stuff I'm trying to protect myself from. I'm just speculating and will find out soon. Plus case management nurses at the insurance company and patient advocates can be relied on to assist if anything goes wrong.
My experience is that every claim is handled individually. For instance, my insurance seems to have gotten about my cancer diagnosis, even though I was insured with them the whole time and they paid for all my chemotherapy. But we have to continually remind them with separate appeals for various things.

My current doctor seems to know how to talk to the insurance company medical director to make the case for getting things approved. So, while it's good to know what the policy is and all the fine print for IVIG, If your situation falls outside of the policy, the doctor can make a case based on what happens if you don't get the treatment and the costs to the insurance company associated with that or put it in life and death terms for them.

I think having one diagnosis and getting something approved for that, and then finding additional justification later on that strengthens your case will only help. After being on IVIG for a year my insurance denied it even though I was within the policy, and my doctor had to go in with all of the information all over again and do a peer to peer consult and they approved it. I think it's just good too to keep collecting information that justifies your treatment.

Good luck:hug:
 
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Reading here I identify this as an issue of awareness and an issue that is still an issue even if there is awareness. Because there's nothing one can do about the issue of sudden needs for testing that come up during the course of ivig treatment, when there's no forewarning to wait the amount of weeks necessary to get accurate results. Anyone getting treatment with ivig please be aware of this and make your doctors aware if they are not.

The upshot for me? Based on these papers and a few more case studies I read, seven weeks can be cautiously considered when an abundance of caution to wait 4 months isn't advisable. At 5 weeks test if necessary but it should be documented clearly in a patients chart that it might not be accurate due to immunotherapy. In emergencies, probably best to still test for things and that doctors should know it's unreliable and rely on their clinical skills. This question of what to do must come up all the time with physicians who are aware.
If anyone finds more clarifying information, please post.

The immunomodulatory effects can be life-saving, however recent administration can complicate diagnostics when patients later present with symptoms necessitating serologic testing.
Conclusion
Use of IVIG has increased significantly over the past decade; however, the potential pitfalls in serologic diagnostics associated with receipt of IVIG have not been studied systematically and is likely a confounder in serologic diagnostics causing both false-positive and false-negative results. We found a number of screening and diagnostic serologies can be artificially altered after infusion of IVIG.
False-positive Serologic Results attributable to IVIG therapy

Unfortunately there seems to be no standardized guidelines. It was difficult to find these recommendations. If anyone can find proposed standards by an official body or more recommendations, please post them.
IgG antibody tests on such patients within six weeks of IgG administration are generally unhelpful and sometimes dangerously misleading.
half-life of IgG is several weeks.
False interpretation of diagnostic serology tests for patients treated with pooled human immunoglobulin G infusions: a trap for the unwary

half-life is between 3 and 4 weeks, and a 4-month delay should be respected to avoid any misinterpretation of a serological profile.
As highlighted by several recent publications, misinterpretation of serological profiles may have deleterious consequences and clinicians should be more sensitized on this issue
any diagnostic assay based on an immunological reaction could potentially be disrupted by IVIG
this phenomenon, despite already largely described, remains too often unconsidered by prescribers.
Too Often Forgotten: Passive Transfer of Antibodies

This contains factual information on the presence of some antibodies after ivig that can paired with case studies on when people's serology was presumed to become accurate again. But this is only talking about some infection antibodies, not autoimmune. That's a different conversation because immunotherapy is intended to modify autoimmunity. So there's that additional factor.
This prospective, open-label, non-randomised, multicentre, phase III trial investigated the pharmacokinetics of a new 10% liquid IVIG product (panzyga®; Octapharma) in 51 patients
The median terminal half-life of total IgG was 36.1 (range 18.5–65.9) days, with generally similar values for the IgG subclasses (26.7–38.0 days). Median half-lives for specific antibodies ranged between 21.3 and 51.2 days for anti-cytomegalovirus, anti-Haemophilus influenzae, anti-measles, anti-tetanus toxoid, anti-varicella zoster virus antibodies, and anti-Streptococcus pneumoniae subtype antibodies.
Pharmacokinetics of a novel human intravenous immunoglobulin
 
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International Autoimmune Encephalitis Society Doctor's List
The Doctors on this list have published research in the field of Autoimmune Encephalitis and/or have an established level of expertise in autoimmune neurology. Their education and training is consistent with the major centers in Autoimmune Encephalitis around the world.
Choosing a physician is one of the most important health care decisions you can make. We highly suggest that you search the name of the doctor you have chosen to hire on Pubmed’s website. This will allow you to become more informed about the physician’s background and topics of research if they have published any peer reviewed research and will aid in your ability to make a well informed decision.
Autoimmune Encephalitis Alliance Clinicians Network (international)
The Autoimmune Encephalitis Alliance (the AE Alliance) has created the AE Clinicians Network to connect families, patients and medical professionals with clinicians who have experience diagnosing, treating and caring for autoimmune encephalitis. The AE Clinicians Network provides a listing of doctors and medical professionals who have self-reported as having this type of experience. Click on a clinicians name (below) to see contact and experience information as reported by the clinician.
 

Hoosierfans

Senior Member
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@PisForPerseverance, let me just say again THANK YOU again for making this thread. I will look up your blog as we share a lot of the same antibodies, and a lot of the same symptoms (I am not sure if you have extreme dizziness like I do tho). But in any event, it thrills me to no end that your first course of IVIG went so well and you saw such a benefit! It’s similar to @Gingergrrl’s experience. Both of your experiences give me so much hope for IVIG, which I hope to start once I see my new neuroimmunologist (exactly 1 month from today!)
 

ChookityPop

Senior Member
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@PisForPerseverance, let me just say again THANK YOU again for making this thread. I will look up your blog as we share a lot of the same antibodies, and a lot of the same symptoms (I am not sure if you have extreme dizziness like I do tho). But in any event, it thrills me to no end that your first course of IVIG went so well and you saw such a benefit! It’s similar to @Gingergrrl’s experience. Both of your experiences give me so much hope for IVIG, which I hope to start once I see my new neuroimmunologist (exactly 1 month from today!)
Where can I read about the IVIG benefits? And can someone share a link to the blog : )