Autoimmune Disorder Causing Dysautonomia

[Godsgal]

So since Dec. 17, I have had this crazy storm beat down on me and I have been all over the internet trying to figure out what's wrong with me since doctors are having a difficult time. I decided to see an immunologist because I keep being told that I have something really rare causing the dysautonomia. I got some labwork back today and the c4 is low, the neutrophils are high, and the absolute pathway is low. I have no clue what any of this is but the nurse told me the doctor says that the numbers suggest an autoimmune disorder which I see on this site can cause dysautonomia.

Well I have normal ANA. I'm just trying to figure out which autoimmmune disorder it could be that's causing this. I see on this site that autoimmune disorders can cause dysautonomia but I need a list of those so I can start doing my due diligence. I know GBS can be but that one doesn't seem to match with me. I have some mild neuropathy in my feet and a lot of the dysautonomia symptoms & POTS too.

Can anyone just start spouting off the ones linked to dysautonomia so I can research them? And anyone else have these labwork abnormalities???

[arizona girl]

Yes you are right about the autoimmune association. The specialties that screen for autoimmune illness are hematologists, rheumatologists, and "neurologists, that treat patients with autoimmune neuromuscular neuropathies". Immunologists can also look for primary immune disease by screening immunogolbulins like Igg, iga, igm and sub-igg panel. Your C4 can be part of that work up with an immuno doc or a hemo doc.

If you search my forum name and small fiber neuropathy, dr. levine, or common variable immune defeciency you can read what I was tested for and how I'm being treated. I was diagnosed by skin biopsy with autoimmune small fiber autonomic neuropathy, then we found the CVID, which is most likely genetic and I was probably born with it. People with immune defecincy almost always have some other companion autoimmune disease with it. They treat me with the immune replacement IVIG, and antibiotics for the hard to see infections that I get. When you don't have an immune system that works right your body can't mount a proper defense so you don't get overt symptoms until the infection has progressed further, you just feel like crap. The neuropathy also causes an increase in catchocolamines like norepinephrine upon standing, that in turn can mess up your endocrine system causing metabolic syndrome.

There is a lot of info here on the forum and in the main dinet web -page under mechanism and causes. I encourage you to read up and not just wait for someone to answer your question. Those main pages that list all the possiblities is what helped me know which one fit me and what to get tested for. I wish you well on your journey to health and hope you get treatment sooner rather then later. Don't give up and keep pushing the docs till you are satisfied, you know what you have.

[crowebirds]

My daughter has the same labwork results. I was told by her immunologist that she does not match any of the known autoimmune disorders. He said that there are thousands of autoimmune disorders that are not identifiable just because not enough people have the same one. In other words if it doesn't become a squeaky wheel then they can't get funding to research it. Some of the more common AI disorders include Multiple Sclerosis, Sjogrens,SLE (Lupus). Do a google for "List of AutoImmune Disorders," this should help you find what you are looking for.

Good Luck with your search,

Robin

[juliegee]

Decreased Complement Levels( C-4) may be seen with:

Recurrent microbial infections (usually bacterial)

Autoimmune diseases, including SLE and vasculitis

Hereditary angioedema

Acquired angioedema

Various types of kidney disease, including glomerulonephritis, lupus nephritis, membranous nephritis, IgA nephropathy

Malnutrition

Septicemia

Serum sickness (immune complex disease)

Increased Neutropils:

Neutrophils can increase in response to bacterial infection or inflammatory disease. Severe elevations in neutrophils may be caused by various bone marrow disorders, such as chronic myelogenous leukemia.

Sorry, I never heard of an "absolute pathway." Is there another name for this test?

Julie

[crowebirds]

Decreased Complement Levels( C-4) may be seen with:

Recurrent microbial infections (usually bacterial)

Autoimmune diseases, including SLE and vasculitis

Hereditary angioedema

Acquired angioedema

Various types of kidney disease, including glomerulonephritis, lupus nephritis, membranous nephritis, IgA nephropathy

Malnutrition

Septicemia

Serum sickness (immune complex disease)

Increased Neutropils:

Neutrophils can increase in response to bacterial infection or inflammatory disease. Severe elevations in neutrophils may be caused by various bone marrow disorders, such as chronic myelogenous leukemia.

Sorry, I never heard of an "absolute pathway." Is there another name for this test?

Julie

Thank you, Julie for posting this, TLC does have angioedema as one of her many skin reactions. I never could find a good description of why TLC's C4 was non existent.

I did find this information to help explain the abs pathway.

"Complement, Total (CH50)

This test is used to measure the levels of all Total Complement. CH50 can be used to assess the integrity of the classical pathway of the immune system. A normal CH50 level indicates that all the components of the C1 through C9 are present; however, even in the presence of a normal CH50, the absolute levels of some complement components (eg, C3 or C4) can be significantly (50% to 80%) lower than normal without affecting CH50 activity. This is because normal serum contains C3 and C4 in substantial excess of that required to yield a normal result for CH50. ... For this reason, it may be necessary to measure individual complement components [the absolute pathway]. ... The CH50 assay mainly evaluates the classical pathway."

[Godsgal]

Okay...on the angioedema....what is that like?

I have a spot on my upper leg above my knee where the area under the skin is hurting. I don't know if it's the muscle or what. It seems like it's spreading. I've been checked for a blood clot and that's negative. I have had it for weeks and no one seems to have an answer on it. At night it get's worse, and if I lay on it, it gets worse also.

[Sarah4444]

I am being tested for autoimmune autonomic neuropathy, specifically for anti-ganglionic antibodies. My ANA was 1:80, C4 was normal. Will let you know what happens.

[juliegee]

I am being tested for autoimmune autonomic neuropathy, specifically for anti-ganglionic antibodies. My ANA was 1:80, C4 was normal. Will let you know what happens.

Hi Sarah-

I was hoping you'd chime in on this. Here's a link to NEJM comprehensive study on the subject:

http://www.utsouthwestern.edu/utsw/facdir/cma/fileuploads/7/facdir67844/Vernino_NEJM_2000.pdf

After reading this, I would guess that MANY of us should have this test done, especially those of us w/ unexplained neuropathies. Does anyone know what the treatment implications are?

Julie

[Sarah4444]

I think I read that if the symptoms are very severe (and I don't know how they define that) they have been experimenting with plasma exchange, with some positive results.

[sue1234]

OMG, I want to sweat again like their patients!! I am so heat intolerant because I mysteriously quit sweating. Exactly what would the lingo be on a blood test for this? I have had a few "big word" tests that I wasn't sure what they were, but were normal so didn't NEED to look them up. I just want to see if I have been tested for this.

This definitely sounds like something that should be tested on us. If I have a chance to do whatever is needed and get somewhat better, then I'm ready to go for it!

That paper was from 2000--why was that not being looked at more? Anybody have any other references to this?