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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Post here with
  • Antibodies that are believed or known to cause or contribute to any neurological condition or symptom (this includes motor, sensory, emotional, cognitive and conditions with a known neurological component) (with reference if possible)
  • Ongoing research (share the significance here and make separate fuller thread about it and link to it here)
  • Testing (with reference if possible)
  • Treatment (with reference if possible)
  • Educational, support, and advocacy organizations
  • Doctors directories
  • Graphics
  • Pointing out a contradiction or confusion about the way something is treated or investigated in what were seeing in our reading and studies or in practice. Issues of there not being consensus. (With references if possible)
  • What antibodies you have or had that are believed or known to cause or contribute to any neurological condition or symptom (this includes motor, sensory, emotional, cognitive).
  • What conditions do you have that are associated with those antibodies? (Can put none, unclear, suspected)
  • What investigation did you do that led to finding those antibodies or conditions? (Type of tests)
  • Type of treatment (past or ongoing, can put none or not yet clear)
  • Did you have any improvements? (Yes, no, unclear)
  • Tips and advice from your experience on testing, treatment, self advocacy, navigating healthcare, overcoming barriers to autoimmunity treatment.
  • Links to our threads about successful treatment stories of treating neurological symptoms from autoimmunity
  • Links to our individual threads that ask questions and for help with our own personal situations with investigating autoimmunity for our symptoms and treating. So that people learning from this thread can help each other

Let's keep it mostly information sharing so it's an accessible place people can find information. Of course talk about our symptoms but only with the stuff mentioned above. Link to individual posts with successful autoimmunity treatment stories and asking for help about our situations.

When sharing information, except when about our personal experience, please post a reference and a quote if applicable. If you can't, that's ok, but please pose it as a question to the tune of "I heard xyz and I can't find any information about it (or don't have the ability to look) and don't know if it's true or what it means. Can anyone find information on xyz?"

Having neurological autoimmunity does not negate ME. ME is a neuroimmune condition. Neurological autoimmunities are neuroimmune conditions. Many neuroimmune conditions and processes can occur at the same time. Different antibodies can contribute to the same symptoms as well. Inclusion and exclusion in the diagnosis of ME is a complicated issue. It seems there's a consensus moving to that there are different subsets of causes and contributing factors. But causes and contributing factors are not well understood yet. Autoimmune processes are proposed as causes and contributing factors.

If there is an autoimmune condition that explains your post exertional malaise exactly, and you treat it and it goes away, then you and your doctors can consider you as having had that autoimmune condition but not having had the group of symptoms called ME if you/they want to. But I think that would not be wise. And you don't have to agree with them. ME so far is still a group of symptoms with one hallmark symptom, so any causes and contributing factors that are found for individuals, it would be wise for us and researchers to still consider ourselves as having, or having had, ME. Otherwise as subsets of causes and contributing factors are found, how would we move our understanding forward if everyone who successfully treats the hallmark symptom is no longer considered to have had ME? This is my opinion and we can talk about what's best in terms of definitions for moving our disease understanding forward in another thread, and it gets talked about a lot.

Learning about all neurological autoimmunity to help ourselves is NOT about looking for the cause and treatment of our post exertional malaise specifically. But I wanted to state my understanding that one disease process existing in a person absolutely does not exclude other disease processes. And that multiple contributing factors to humans health and symptoms are being discovered all the time. Our bodies are insanely complex and there's more processes than we can ever hope to understand, I believe. I don't want misunderstanding about this to be a barrier to people investigating and treating autoimmunity.

Increasing our knowledge about autoimmune causes of neurological symptoms doesn't break down all the barriers to the care we need of course. But it is one step that can lead to many ways to break down barriers. If we understand more possible causes of our symptoms we can advocate for the care we need more, find more avenues for investigation and treatment (find or advocate to see new doctors, go to new clinics, reach out to researchers, get into trials), find new allies and avenues of help for breaking down barriers like educational, support, and advocacy organizations and individual allies, and move our choices. We as individuals still may not break down barriers in our own situations to investigation and treatment of autoimmune causes for our neurological symptoms, but at least arming ourselves with tools increases our chances of that, if not now then hopefully in the future.

From what I've learned on PR and my own research based on that, I've had life altering autoimmunity discoveries (hopefully in a good way). And I'm not done investigating at all. I'm so thankful and if sharing information and our stories can do that for me, it can help others just as profoundly.
 
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Comprehensive neurological autoimmunity panel from quest. Attached here is the basic interpretation of it. Does not include some important antibodies for peripheral neuropathy (but has some) and some important antibodies for autonomic dysfunction (but has some). Not all inclusive in general of all well known neurological autoimmunity antibodies. But it's very comprehensive and includes all or most currently well known antibodies for encephalopathy and paraneoplastic conditions.

The way this panel works is with "starting antibodies". These are always tested. Then depending on what's positive, further testing is done.

We should post here other antibodies not as well studied for encephalopathy, paraneoplastic conditions, and all antibodies thought to be associated with any neurological symptoms and conditions.
 

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I am supposed to get the following test from Quest: over a year ago

"Autoimmune Panel"

ANA, RF, Sed rate

Is this the same type of test your referrring to?'

(I seem to get tests which-aren't ever the right ones. Very lousy luck on testing here).

(I cant read the other words the Doctor scribbled on the Rx).


It will take me a while to read thru your post, thanks for doing this.
 
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Paraneoplastic Neurological Syndromes: Laboratory Support of Diagnosis
White paper called a "clinical focus". Guide to well known antibodies associated with paraneoplastic neurological syndromes. A PNS is
when cancer triggers an immune response that attacks the nervous system.
Symptoms vary based on the part of the nervous system that is attacked and can include cognitive, psychiatric, autonomic, and sensorimotor effects.1,2
these antibodies can occur in the absence of an underlying cancer
autoimmune neurological syndromes are not always paraneoplastic (ie, caused by cancer); they can be caused by infectious agents, toxins, or metabolic conditions.
The prevalence of most PNSs is very low, but symptoms often precede discovery of the cancer. Thus, diagnosis of a PNS and its cause may lead to earlier cancer treatment.2
This Clinical Focus discusses the role of autoantibody testing in the diagnosis of PNSs and associated cancer and tumor types. It is intended as an overview; thus, it focuses on studies involving larger cohorts and generally does not discuss case reports unless necessary. Complete diagnostic criteria, prognosis, follow-up studies, and treatment options (eg, immune modulation) of PNSs are beyond the scope of this Clinical Focus. These topics are covered in review articles and guidelines.1-4
Individuals Suitable for Testing [return to contents]

  • Individuals who have signs and symptoms consistent with a PNS (Table 1)
  • Individuals who have a PNS with an unidentified underlying malignancy
  • Individuals with rapidly progressive neurological symptoms of unknown etiology
Screenshot_2021-06-11-11-10-54.png
 
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ANA, RF, Sed rate

Is this the same type of test your referrring to?'
That panel tests for three things and the panel I was referring to in the post before tests for about 37 just to start haha. ANA can be an indication for many different autoimmune conditions but "can be" is the key word. We should talk about the uses and limits of ana in this thread. It's a good thing to test.
 
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That panel tests for three things and the panel I was referring to in the post before tests for about 37 just to start
Do you think I should just do this Three Thing test...as a preliminary test?

Or go back to my doctor and ask Why is this not Comprehensive?

I have lots of neurological issues, my Primary probably can't interpret the complex report I suspect.

I do have a neurology referral from a year ago. COVID struck, and I'm not vaccinated. So I haven't gone.

excuses...I rarely ever want to go out of town let alone get a test.
 
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Autoimmune causes of peripheral neuropathies is an area of ongoing discovery.

Laboratory Diagnosis of Peripheral Neuropathy This white paper provides a brief review of the known causes of acquired peripheral neuropathies and the laboratory tests available for their evaluation and diagnosis.
White paper last reviewed in 2019. Contained within it are many of the better known antibodies known to cause or contribute to peripheral neuropathies. This does NOT talk about other diagnostic tests such as biopsies, nerve studies, and others. Only blood and urine. Doesn't include all antibodies being studied as causes of peripheral neuropathy.
Screenshot_2021-06-11-15-04-29.png
relevant part of the table from the paper but cut off.
 

Tammy

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I went to an immunologist I think in the second year of illness. He did testing and some results showed myelin antibodies. I also had high titers of EBV and it was his belief that the EBV was attacking the myelin sheath. I wish I still had these test results because I have wanted to show them to other Dr.'s.

Edited to add: Besides all the usual CFS symptoms, I had profound muscle weakness along with patches of numbness.
 
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Panel from quest Sensory motor neuropathy complete antibody panel
Sensory-motor neuropathies may occur by various mechanisms. These include development of autoantibodies to neuronal structures such as myelin associated glycoprotein (MAG) antibody, Hu antibody, and the ganglioside antibodies. Sensory-motor neuropathies may also occur via antibody cross-reactivity or local immune complex deposition as seen in autoimmune disease with primarily non-neuronal targets including Sjogren's syndrome (SSA/SSB), systemic lupus erythematosus and related conditions (ANA IFA), celiac disease (tTG antibody), vasculitis (ANCA), and immune complex deposition (cryoglobulins, rheumatoid factor). Motor-sensory neuropathy may be associated with monoclonal gammopathy (serum immunofixation and serum immunoglobulins).
Must call ahead to confirm lab has equipment. I suggest printing it out and asking to speak with a manager when you arrive and asking them to go through it and confirm they have the equipment and that they will do it correctly. Confirm again with the tech. (If I didn't do this with the tech (no manager there), they wouldn't have done it correctly based on their realization when reading it again)

This plus the autoimmune neurology from quest was expensive beyond comprehension unless the number on the paper was a mistake. I don't know how much this one would've been on its own. Do whatever you need to do to confirm beforehand what your insurance is expected to cover and the risk if they dont. There's advice to be found about this but I don't know it. I'm not used to paying co pays on labs from large companies and if I get bills they're small so this was a surprise to hear the cost and the 100 copay for the two tests and I don't want anyone to get into a bad spot. Try smaller panels for autoimmune causes of peripheral neuropathy if you need to.
 

Hoosierfans

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Just a note: for anyone looking into autoimmune neurological issues, I listened to a great talk by a Mayo neuroimmunologist the other day (personal note: Mayo did nothing for me when I visited). The takeaway I got from it was this: they are discovering new antibodies that go after a patients neurology at an ever increasing pace. So, he encouraged patients listening to encourage their doctors to take advantage of the ever growing knowledge of antibodies at Mayo, and have them consult with the labs there.

He also mentioned that they can test for “unknown” antibodies —as I understood it they take a patients CSF or serum and inject it into mice brains and then scan the brains with some sort of contrast. If there is an antibody attacking a part of the brain, that area or areas will light up. So, they may not be able to identify WHAT the antibody is (it might not even have a name yet!), but they can show that there is an autoimmune antibody that is adversely affecting the brain. Pretty cool.
 
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He also mentioned that they can test for “unknown” antibodies —as I understood it they take a patients CSF or serum and inject it into mice brains and then scan the brains with some sort of contrast. If there is an antibody attacking a part of the brain, that area or areas will light up.
Can people do this yet or is this experimental as part of the development of new antibodies to study? If you can find that talk and post it that would be great, if not don't worry about it
 
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he encouraged patients listening to encourage their doctors to take advantage of the ever growing knowledge of antibodies at Mayo, and have them consult with the labs there.
Yeah let's note that here. Encourage our doctors to consult with mayo labs for new knowledge about antibodies that cause neurological symptoms. For example if we identify an antibody and we and our doctors want to know the latest understandings of what that antibody does. To improve treatment. Is that what your impression was of an example consulting with mayo labs might be useful for? Maybe that's not really what their expertise is (keeping up with research). What was your impression of what he was encouraging people to consult on?
 
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Hoosierfans

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I’ll see if I can find the talk and I’ll post the link.

Yes, that’s exactly the impression that I got regarding a consult with Mayo labs — both for docs to understand what a particular antibody does AND to be up to date on the latest kinds of antibody testing that they can do. He said that the research keeps uncovering new antibodies, so it may be worth a call to find out what the “latest” testing is.