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Old 09-21-2015, 04:13 PM #1
Starburst Starburst is offline
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Question Autonomic neuropathy diagnosis

I have been given this diagnosis and feel a bit confused as I have not had many tests to confirm it. For those who have AN, what tests did you have and who diagnosed you?

I am under the care of a gastroenterologist who specialises in gastroparesis and a rheumatologist. They both feel that I have AN, secondary to rheumatoid arthritis (which I've had since 2009). I had a gastric emptying study which showed very delayed gastric emptying. I also had a test which recorded nerve signals to the stomach. This showed that the actual muscle is healthy but the nerve has been damaged and is sending inappropriate signals to the stomach. I have an abnormal heartbeat and an echocardiogram was normal. All this has led them to conclude the diagnosis. Reading online has made me discover that people are usually diagnosed by a neurologist. Should I be asking for this or is my diagnosis pretty conclusive?

Thanks in advance. I freely admit that this area is not my forte, so would appreciate any information.
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Old 09-21-2015, 10:45 PM #2
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It may not seem like you've had many tests, but the ones you have had are apparently quite conclusive. The gastric empty test obviously confirmed your gastroparesis...tell-tale sign of autonomic dysfunction/neuropathy.

Your heart rate being abnormal had to have come from at least an EKG or holter test...but it must have showed something to make the doctor believe that together with the GI test that you must have an autonomic neuropathy.

Yes, some are diagnosed by a neurologist, but when it comes to autonomic neuropathy (vs peripheral) a GI or even a cardiologist can diagnose it (since it involves the GI tract and cardiac function). Actually, it's quite common for a cardiologist to be the first to pick up on the dysfunction.

If you are not comfortable with the diagnosis, then ask for a autonomic battery to be done (by a neurologist). It would include a holter test, 24 BP, tilt table, QSART and/or thermoregulatory sweat test, and possibly even a skin biopsy for autonomic fiber study.

It really all depends on what your symptoms are as for who does the testing and diagnosing. Obviously you went to a GI for some stomach problems, and he found the answer...gastroparesis. Most with gastroparesis, also have other autonomic dysfunction, so don't be surprised if other testing proves positive as well.

Hope this helps.
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Old 09-22-2015, 03:42 AM #3
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Quote:
Originally Posted by Starburst View Post
I have been given this diagnosis and feel a bit confused as I have not had many tests to confirm it. For those who have AN, what tests did you have and who diagnosed you?

I am under the care of a gastroenterologist who specialises in gastroparesis and a rheumatologist. They both feel that I have AN, secondary to rheumatoid arthritis (which I've had since 2009). I had a gastric emptying study which showed very delayed gastric emptying. I also had a test which recorded nerve signals to the stomach. This showed that the actual muscle is healthy but the nerve has been damaged and is sending inappropriate signals to the stomach. I have an abnormal heartbeat and an echocardiogram was normal. All this has led them to conclude the diagnosis. Reading online has made me discover that people are usually diagnosed by a neurologist. Should I be asking for this or is my diagnosis pretty conclusive?

Thanks in advance. I freely admit that this area is not my forte, so would appreciate any information.
defintely seek a neuro advice, if AN is suspected. If you have sweating excessive/or lack of, urinary problems its another telltale sign as well.
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Old 09-23-2015, 05:52 AM #4
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Thank you both for the replies. The GI specialist I saw specialises in gastroparesis. He's a top professor and I do trust him. It just threw me as the first GI I saw was a generic gastroenterologist who was convinced it was just "one of those unfortunate things" that I have gastroparesis and an autoimmune disease.

I'm not overly keen to put myself through more tests, especially if it won't change the outcome. I did get a letter from rheum this week and she has referred me for nerve tests to a neurophysiologist. I shall see what the outcome from those tests are.

Thank you again!
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Old 09-25-2015, 02:39 AM #5
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There is a blood test for Autoimmune autonomic ganglionopathy - ganglionic Acetylcholine receptors antibodies.
It can be done at Mayo clinic as a part of there paraneoplastic evaluation (http://www.mayomedicallaboratories.c...rpretive/89904)
or much cheaper at Oxford labs (http://www.ouh.nhs.uk/immunology/dia...ntibodies.aspx).

There is a good lecture about it at mayo’s web site -
http://www.mayomedicallaboratories.c...12/07-autodys/
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