spinner Posted January 7, 2014 Report Share Posted January 7, 2014 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/"Autonomic Neuropathies Associated with Ganglionic Antibody"Just had TST sweat test at CC with Dr. Shields (diminished sweating), and he wanted to re-do my test for ganglionic antiobody, which i scored high out of range on again.Also have scored high for inflammation with C REACTIVE PROTEIN. Lactase is also low, out of range.Anyone else dealing with this? They've scheduled a body catscan to rule out various cancers, although the likelihood is small. Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 7, 2014 Report Share Posted January 7, 2014 Hello...this is my first time posting. I am seeing Dr. Jaeger at CC and I have failed the TTT as well as QSart and have 40% blood pooling when I sit up as well as 10% blood volume loss. I am going Thursday for the TST with a possible nerve biopsy if I fail that test as well. He also mentioned that it may be caused by antibodies among other things as underlying causes. Sooooo.....I guess I can't say I have tested positive for the same things as you but I may in the near future! Ha! The CC has been great so far and a nurse named Chad was the sweetest and said, "You are safe here". What is better than that?! I wish you the best! Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 7, 2014 Report Share Posted January 7, 2014 It sounds like you are getting some answers Spinner. IVIG treatment or plasma exchange may be in your future soon.Rachel Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 7, 2014 Report Share Posted January 7, 2014 Sorry that this is what it is turning out to be, but there is some relief in putting a name to it. Now you can start the fight and as Lmom mentioned you will have a variety of treatment options available to you. I have been on both ivig and plasmapheresis and also treat with immune suppressants. I'm available for support and tips when the time comes having been down this road already.Looking back the hardest part of the process was the not knowing and the diagnostics journey. Right now for me there is no cure. We still need to tweak my treatment plan and I still do have setbacks here and there, usually when I over do it. Mostly though I've had improvements and we are managing it better then without the treatments. I have sfn autonomic neuropathy, cvid and a couple of immune diseases.The treatment plans though mostly run the same road map as your diagnosis, with the exception of a possible cancer. We have carcinoid members on the forum that manage even that very well. So, even the cancers can be dealt with. I least now you have a name you can research. Sounds like you've got the right doctor on your team. It makes all the difference. So hang on to your hope and find your moments of Joy!I had a joyful day spending time with my two god daughters yesterday! I'm still smiling today! Find those moments while you go through the rest of your medical journey, like that old calgon commercial, they will take you away for a bit. Quote Link to comment Share on other sites More sharing options...
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