Question About Autoimmune Testing

[all4family]

Hi,

I just have a question. I have been reading a lot of things on here, and haven't seen anything about the blood test that I had done. It's a antibody marker called ACHR.neurol.AB. It measures if you have antibodies to the ganglia. Has anyone else on here had this test done? And if so where did it lead your Drs.? Or has anyone on here heard of this? I am just wondering. Anything anyone knows about this would really help me.

Thanks so much,

Healing Hugs to all

Suzy

[momma]

Hi,

I just have a question. I have been reading a lot of things on here, and haven't seen anything about the blood test that I had done. It's a antibody marker called ACHR.neurol.AB. It measures if you have antibodies to the ganglia. Has anyone else on here had this test done? And if so where did it lead your Drs.? Or has anyone on here heard of this? I am just wondering. Anything anyone knows about this would really help me.

Thanks so much,

Healing Hugs to all

Suzy

reply:

not sure if this will help but my daughter had a blood test to tell if she had hashimoto's. i'm not sure of the exact name but i know it measured antibodies. hers were very high which showed she had hashimoto's.

healing hug back to you....momma

[firewatcher]

I've had the AChR-binding and blocking anti-bodies tested. They are looking for Myasthenia Gravis in me. One came back OK and the other was not positive, but not low enough to be negative either. I see the neuro on Friday to know for certain. Auto-immune issues seem to be the constant roommate of dysautonomias.

[dsdmom]

Researchers have found that some dysautonomia patients test positive for the AChR antibodies. Patients who have test positive have been treated with with IVIG. Kudos to your docs for testing for this.

[all4family]

Thank you for the help. I do know that it was part of a paraneoplastic syndrome screen, and that that is why I am having further testing done. I know mine was definatly positive. I don't think it has anything to do with hashimotos or mastayes Graves, because those were not mentioned. But that is very interesting that the autoimmune disease is so closely related to dysautonomia. My Dr said I have a neurological autoimmune disease. dsdmom can you tell me what IVIG is? I had to take 2 shots for each pregnancy for being RH-. I believe it was called rogahm. That is like an autoimmune thing. Is it like that? And if you know do you know what is considered a high level on this test? My Dr. (who by the way I am very grateful to because she told me she believed me when I knew no one else did) said I had a high level. It was something like 46 times as high as it should be.

I thank you all for helping me with this.

healing hugs

Suzy

[flop]

Hi Suzy,

a while back some research showed that about 14% of people with POTS had antibodies to the post-ganglionic Acetylcholine receptor (AChR) (also called acetycholine neuronal antibodies). If the test is positive it means that your body is attacking a specific part of your nervous system. I was tested for this and I believe if my test had been positive then the doctor was going to prescribe Mestinon (pyridostigmine) for me. Mestinon is a drug used in the treatment of myasthenia gravis (a condition with weakness of the muscles due to problems with ACh) so it makes sense that the same blood test would be done looking for both problems.

IVIG stands for Intra-Venous (given via a drip) Immunoglobulin. I know a few members on here have had IVIG treatment but I hadn't heard of a connection between the AChR test and this treatment.

Just for clarification - Hashimoto's thyroiditis is an autoimmune condition where the body makes antibodies against the thyroid gland, so the blood tests for Hashimoto's would be thyroid function and thyroid antibody titres.

Flop

[dsdmom]

There's a paper out there somewhere from the docs at Mayo saying that in some cases POTS is an autoimmune process. IVIG (Intravenous Immunoglobulin) can lessen the symptoms. I would definitely discuss this with your doc. If she knew enough to test you for this antibody she should have heard of this treatment.

Here is some reading for you:

http://content.nejm.org/cgi/content/full/343/12/847?ck=nck

http://www.neurology.org/cgi/content/abstract/70/20/1926

[all4family]

There's a paper out there somewhere from the docs at Mayo saying that in some cases POTS is an autoimmune process. IVIG (Intravenous Immunoglobulin) can lessen the symptoms. I would definitely discuss this with your doc. If she knew enough to test you for this antibody she should have heard of this treatment.

Here is some reading for you:

http://content.nejm.org/cgi/content/full/343/12/847?ck=nck

http://www.neurology.org/cgi/content/abstract/70/20/1926

That is the one. I keep forgeting to put the ganglionic part to it. Thank you. She did say there is no cure, but there is a medication for treatment. Is this still pots? or does it make it something different? Or is it pots with a twist? I am going to read this now. Thank you.

healing hugs

Suzy

[all4family]

Hi Suzy,

a while back some research showed that about 14% of people with POTS had antibodies to the post-ganglionic Acetylcholine receptor (AChR) (also called acetycholine neuronal antibodies). If the test is positive it means that your body is attacking a specific part of your nervous system. I was tested for this and I believe if my test had been positive then the doctor was going to prescribe Mestinon (pyridostigmine) for me. Mestinon is a drug used in the treatment of myasthenia gravis (a condition with weakness of the muscles due to problems with ACh) so it makes sense that the same blood test would be done looking for both problems.

IVIG stands for Intra-Venous (given via a drip) Immunoglobulin. I know a few members on here have had IVIG treatment but I hadn't heard of a connection between the AChR test and this treatment.

Just for clarification - Hashemoto's thyroiditis is an autoimmune condition where the body makes antibodies against the thyroid gland, so the blood tests for Hashemoto's would be thyroid function and thyroid antibody titres.

Flop

Thank you so much for the information. I think I am confusing people because I keep forgetting a part. (sorry brain gets kinda slow) its ACHR.neurol.gangl.AB. and that is what she said is my body is attacking my ganglionic part of my brain, or central nervous system. I just have had so much happening its hard to remember and get it all straight. Thanks for the info on the IVIG also. does that mean you have to go to the DR for the treatment? I really appreciate the help. Thanks.

healing hugs

Suzy

[ramakentesh]

Yeah this is an interesting area. Dr Blair Grubb says that while 14% of patients test positive to these antibodies, the majority of patients in his opinion have some sort of autoimmune pathophysiology behind their POTS - that is antibodies either attacking the receptors you mentioned or the norepinephrine receptors at the synaptic cleft.

Also Dr Julian Stewart believes autoimmune peripheral neuropathy is the cause of POTS in patients with HIGH FLOW POTS - that is excessive venous pooling in the arms, legs and lower body as a result of an autoimmune attack on the nerves that control venous constriction.

Autoimmune illnesses have many newer and more tested treatment protocols so this means that for these patients, there may be a number of different treatment options on the horizon.

[flop]

The health system here in the UK is a bit different to the USA but here I think most people having IVIG treatment go to a hospital unit as an outpatient to get their infusions. In some places (particularly for children) there is funding for nurses to come to people's homes to give the treatment.

If your antibody titres were very high then I guess you need to talk to your doctor about what treatment may help, take along the articles and if your doctor isn't sure what to do ask them to refer you to a specialist (but by knowing to test for antibodies it sounds like they should know).

[all4family]

The health system here in the UK is a bit different to the USA but here I think most people having IVIG treatment go to a hospital unit as an outpatient to get their infusions. In some places (particularly for children) there is funding for nurses to come to people's homes to give the treatment.

If your antibody titres were very high then I guess you need to talk to your doctor about what treatment may help, take along the articles and if your doctor isn't sure what to do ask them to refer you to a specialist (but by knowing to test for antibodies it sounds like they should know).

Thank you for answering. Yes I believe they know what to do. It is at Mayo Clinic in AZ, and it was a GI specialist that did the test. She refered me to a neuro at the Mayo also. I think he might be a specialist in dysautonomia. I understand the Mayo specializes in this stuff, so I am sure they do know. I just don't know what to expect, and I will have to travel for each treatment. But it is a small price to pay if it helps. Anyways thanks for the answer.

healing hugs

[all4family]

Thank you Ramakentesh. I do appreciate the information. The best place to learn is from others who are walking the walk. Is Dr Grubb a specialist? When I first learned about this I thought that was the standard, or at least many people have this blood test to determine dysautonomia. Thats why as I was reading here no one was even mentioning the blood test. So I guess I just wondered how it fit into the whole dysautonomia thing. I thought all dysautonmia was considered autoimmune. Thank you for the information.

healing hugs

Suzy

[flop]

Dr Grubb is one of the biggest names in dysautonomia patient care. He is an electrophysiology cardiologist based in Ohio. He gets very good reviews from most of his patients and I believe has quite a waiting list to get an appointment. From what I have heard from others it is his compassion and understanding as well as his work on POTS that makes him so highly sought after.

He has written a book (aimed at both lay-people as well as medics) entitled "The Fainting Phenomenon: Understanding Why People Faint and What Can be Done about it" 2nd Edition, Blair Grubb. It isn't too expensive and can be bought from places like amazon if your library doesn't have a copy. His other book " Syncope: Mechanisms and Management" (Hardcover) by Grubb, Blair P. MD (Author), Brian Olshansky (Author) is much more in depth and aimed at physicians (and has a much larger price tag!).

[all4family]

Dr Grubb is one of the biggest names in dysautonomia patient care. He is an electrophysiology cardiologist based in Ohio. He gets very good reviews from most of his patients and I believe has quite a waiting list to get an appointment. From what I have heard from others it is his compassion and understanding as well as his work on POTS that makes him so highly sought after.

He has written a book (aimed at both lay-people as well as medics) entitled "The Fainting Phenomenon: Understanding Why People Faint and What Can be Done about it" 2nd Edition, Blair Grubb. It isn't too expensive and can be bought from places like amazon if your library doesn't have a copy. His other book " Syncope: Mechanisms and Management" (Hardcover) by Grubb, Blair P. MD (Author), Brian Olshansky (Author) is much more in depth and aimed at physicians (and has a much larger price tag!).

Thanks again for the info. I will be looking that book up. Nice to know there is so information out there, as I understand this to be a rare condition. Where is Dr Grubb located? I looked at the list of specialists, and didn't find any close to me. Although I am very happy with the Mayo Clinic, I don't know what will be happening after all the testing is done.

thanks again,

healing hugs

Suzy

[flop]

Dr Grubb works in Toledo, Ohio. His contact details will be on the physician's list page on the main website.

POTS is "rare" I have been quoted numbers of 1-2 cases per million people but I suspect it is actually quite common but under-diagnosed. It can take a long time to get a diagnosis and so many people are misdiagnosed as having anxiety or other psychological reasons for their physical symptoms. Getting the diagnosis can be the hardest part of the battle!

Flop

[ramakentesh]

unfortunately its not a standard test. The tests seem to be dependent on the opinion of your specialist - and every specialist seems to have quite differing opinions on the cause of POTS/dysautonomia

[all4family]

Thank you all for the help. I just wanted to let you know that I did the testing today, and there was no medication used. The hardest part for me ended up being the valsalva manuver. ( I think that is right). I asked the woman if they would be able to "tell" anything on the test, and she said I think they will be able to find "something" I took that as meaning there is something to find on there. She also told me if you really have dysautonomia it doesn't matter if you are feeling good. The test is very specific and will see it. The one thing I did see was I looked up at the monitor once, and my bp was 77/something. But I really don't know anything. I am just happy to have done the test, and not been given any medication. Thank you all for your support and help.

healing hugs

Suzy

[juliegee]

I'm trying to make sense of all of this- new to me. I've had my immunoglobulins repeatedly tested and my IgG is really low- 530. I think 750 is normal. (My IgA is slightly low.) My allergist/immunologist says I may need to consider IVIG if I drop below 525. I've been dropping steadily for years now. I Do have antibodies to various things, like pneumonia (I was really sick last winter!) so that indicates that my immune system IS working despite the strangely low numbers.

Anybody else have this? OR, if you've done IVIG- why?

Julie

[all4family]

I'm trying to make sense of all of this- new to me. I've had my immunoglobulins repeatedly tested and my IgG is really low- 530. I think 750 is normal. (My IgA is slightly low.) My allergist/immunologist says I may need to consider IVIG if I drop below 525. I've been dropping steadily for years now. I Do have antibodies to various things, like pneumonia (I was really sick last winter!) so that indicates that my immune system IS working despite the strangely low numbers.

Anybody else have this? OR, if you've done IVIG- why?

Julie

Hi Julie,

I don't know what IgG is. The test I had was part of a paraneoplastic syndrome panel. It tests for immune markers against cancer. usually lung cancer. It is a form of dysautonomia. (that is the way it was expained to me.) It can occur with or without cancer. I really don't know how they tell for sure if it is occuring with cancer, but I was just happy they didn't mention cancer once to me. Some people with pots, and something called GI dysmotility (I'm sure you guys know what I mean I can't remember the exact name)

I am going to an allergist on monday, because I have all over body hives. I seen you also have hives. Does the IgG have to do with allergies? Sorry I don't know an answer about the IVIG thing. Maybe you can tell me what IgG is. And do you know if it is common for people with dysautonomia to have hives? Oh. The one thing I can tell you is that the Dr who did the testing before I even knew the name dysautonomia said it is a neurological autoimmune disease that I had tested positive for . So I don't think it is the same as allergy markers. But I really don't know. Wish I was more help to you.

Suzy