looneymom Posted October 10, 2013 Report Share Posted October 10, 2013 I hope I have asked this question correctly. I ask this question because sfn is diagnosed sometimes by a biopsy and other MAYO testing.. Is it possible that high levels of autoimmune antibodies can cause an immune related neuropathy? Has anyone had neuropathy diagnosed in this manner. Rachel Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 10, 2013 Report Share Posted October 10, 2013 Yes, I was highly positive on the antibody test for AAG (autoimmune autonomic ganglionopathy) - I have dysautonomia symptoms including neuropathy - the diagnosis of AAG actually saved my life as I began receiving the correct treatment once properly diagnosed. Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 11, 2013 Report Share Posted October 11, 2013 I had the panel run but didn't have positive results on the tests. I think Dr Raj from Vanderbilt was saying (in the video which Alex posted recently) that getting a positive result on the testing is pretty rare. Quote Link to comment Share on other sites More sharing options...
Natops Posted October 11, 2013 Report Share Posted October 11, 2013 My diagnosis from Mayo – “THE FOLLOWING ANTIBODIES WERE IDENTIFIED: CALCIUM CHANNEL BINDING ANTIBODY,N-TYPE.THIS PROFILE, IN THE PROPER CLINICAL CONTEXT,WOULD SUPPORT NEUROLOGICAL AUTOIMMUNITY. A PARANEOPLASTIC BASIS SHOULD BE CONSIDERED, ACCORDING TO AGE,SEX,AND OTHER RISK FACTORS. TEST RESULT REFERENCE INTERVAL” Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 11, 2013 Report Share Posted October 11, 2013 So...is Mayo saying that if clinical symptoms fit, you have an autoimmune neuropathy? - and have they ruled out a tumor as the cause? - am I reading this right? There is nothing like clarity and user-friendly communication between health professionals and patients........ Quote Link to comment Share on other sites More sharing options...
Anoj Posted October 15, 2013 Report Share Posted October 15, 2013 what is autoimmune autonomic ganglionopathy? does that just mean your neuropathy is autoimmune? who does the test for this. is it only autonomic centers like mayo? or do regular neuros test for this? Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted October 16, 2013 Report Share Posted October 16, 2013 While at Mayo in 2011 I underwent extensive lab work looking for the cause of my autonomic neuropathy. Even though I came up seronegative, an autoimmune cause was still thought to be a possible reason. I have heard that Mayo lab has expanded upon their testing capabilities so when I return next year I'm assuming the testing will be redone especially since I have developed symptoms of sfn. Janet Quote Link to comment Share on other sites More sharing options...
Natops Posted October 17, 2013 Report Share Posted October 17, 2013 Well – Ive been screened for cancer twice in the last year (MRI, PET, CT scan) – it has all come back negative so far Quote Link to comment Share on other sites More sharing options...
E Soskis Posted October 20, 2013 Report Share Posted October 20, 2013 The neurologist told me that AAG is very rare. In fact, he called me in the middle of the night just to tell me how rare it was and how high my antibody levels are that show I indeed have the disease. The test can be run by several labs in the USA. My understanding is that just because the test comes back negative, it does not mean one doesn't have the disease. Mayo in Rochester has done the most work with the disease and they feel they have the most definitive testing. The neurologist group that is treating me consulted with Mayo to determine exactly what lab tests needed to be performed and how to order them. Once the origin of the disease was proven not to be cancer, then the lab tests definitively pointed to AAG. I began treatment with IVIG and now am receiving plasma exchanges. The next step would be immune-suppressant drugs in combination with plasma exchanges. The supply of AAG patients from which to perform a scientific study is very limited therefore, treatments are anecdotal and "recommended" but, not proven by any definitive study. Remember, there are other forms of autoimmune neuropathy - if your physician thinks AAG is a possibility, have him test for it but, keep an open mind to other possibilities. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 20, 2013 Report Share Posted October 20, 2013 E Soskis, do you have hypotensive POTS? Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 20, 2013 Author Report Share Posted October 20, 2013 Hello everyoneTyler had the Paraneoplastic Autoantibodies test ran this last Wednesday. I am hoping it's negative. Tyler has an appointment to see a new neurologist in a month to investigate a PANS/PANDAS diagnosis. The doctor in charge of the PANDAS study has contacted us personally and we will be meeting with her in another week. She will be doing more testing to check for some different antibodies that also indicate PANDAS.Tyler's heart rates are better but blood pressures are low still. He started complaining about ear pain on Friday and today he is in terrible pain. So hubby is taking him to urgent care. I think ear infections can be caused by strep. So I will check and see if we can get a strep titer test down. Maybe we will be able to finally chase this PANDAS diagnosis down. Feeling overwhelmed but determined to get the bottom line of what is causing Tyler's POTS. He has also had the testing for AAG. It was negative. Hubby just called. Tyler does have a double ear infection inner and outer. Not looking forward to this week of school. Hope everyone else is having a pain free day.Rachel Quote Link to comment Share on other sites More sharing options...
corina Posted October 20, 2013 Report Share Posted October 20, 2013 I'm sorry he is in so much pain! Sending healing thoughts his way. And best to you Rachel, Tyler is so lucky to have you as his mom! Quote Link to comment Share on other sites More sharing options...
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