kangaSue
Senior Member
- Messages
- 1,857
- Location
- Brisbane, Australia
I know that feeling, at least I have been able to contain medical costs somewhat by having most of my care through the public hospital system.just another drain on dwindling resources when one can't work!
Getting tested for AAG has been a drawn out affair. I first bought it up with my G.I. specialist (a motility specialist apparently, the highest authority at QLD Health, Royal Brisbane Hospital) over 2 1/2 years ago. It finally come about by luck though, I've been persisting for the last 12 months in trying to get a trial of dexamphetamine because of it's beneficial use in some instances of chronic pain and I don't tolerate any other analgesics.How would you ever get any doctor to test for this? It seems so obscure. What specialty of medicine would be most familiar with and likely to acknowledge that a3-nAChR Ab is worth testing for?
http://www.ncbi.nlm.nih.gov/pubmed/17937098
A last ditch effort to give me a brush off on that idea was to first do an Autonomic Function Test (AFT) panel as it was strongly suggested to me that I lacked other autonomic dysfunction symptoms for dexamphetamine to be effective. After I had failings in four of the five tests in the AFT panel, I was finally taken seriously on it maybe being antibody related as well.
All I can suggest in dealing with specialists on this issue is to have some good evidence in the form of clinical and research articles and don't say "I think it's.....", rather, ask politely "Could it be possible to have......."
A couple of articles for testing on the basis of gastroparesis alone that I used;
http://www.ncbi.nlm.nih.gov/pubmed/17101331
http://www.ncbi.nlm.nih.gov/pubmed/18599359
http://www.mayoclinic.org/medical-p...ces/autoimmune-gi-dysmotility-a-new-direction
The G.I. still wouldn't act on anything until I had been seen by a Neurologist so waiting times in the public system are a problem but I was seen relatively quickly in the end. Again, as luck would have it, the Neurologist was familiar with autonomic ganglionopathy and didn't need prompting from me to order the AChR Ab test after taking my history, that was a relief after the resistance I had from my G.I. doc.
A hurdle with this particular test (a3-nAChR Ab test) is that it isn't done in Oz, blood has to be sent to either the U.S or U.K. It can be handled through one of the private pathology labs (at a cost, I was told $300 for just this test) but the Neurologist said it was warranted for Royal Brisbane Hospital to bear the cost, the only drawback being that each patient's blood doesn't get sent separately, it's held until there's batch of other samples bound for Mayo.
I'm lucky to have a very supportive G.P. (General Practitioner) in my corner too. He ordered some of the antibody tests that can be done here, major pathology labs can do the voltage-gated calcium and potassium channel tests but they're about $100 for each ion channel type with no Medicare rebate. My G.P. tipped me off that if I took the pathology request to a public hospital pathology dept, they often don't charge you so I tried it out and he was right, no charge.
I have a low antibody titre for N-type voltage-gated calcium channel and the acetylcholine receptor for myasthenia gravis which was mistakenly done instead of the a3-nAChR Ab test but both were considered normal. One's left to ponder if a low normal antibody count is only normal when you don't have symptoms of chronic autonomic dysfunction. That's a fight for another day if the Mayo results are negative.
Because I have a similarity of symptoms to Sjogren's Syndrome (no ANA antibodies though), my G.P. also referred me to the RBH for an Immunologist consult as they also have a Sjogren's Syndrome unit there. He tested and cleared me for Sjogren's, Lupus and Scleroderma. With you having ANA antibodies, an Immunologist would probably be the best place for you to start too.
That's often quoted by doctors, in another forum I frequent with a couple of thousand gastroparesis contributors, it is not often found to be the case.My Gastroparesis was severe for five years and because the GI specialist managing me said that if the paralysis is due to a 'virus' it may improve or disappear by two years.
https://www.inspire.com/ (The AGMD GI Motility Disorders group or G-PACT group for gastroparesis discussions)
Conversely, a small proportion of those with viral onset have the situation in which individuals do not respond to any therapies and the course of their illness is a slow trend of deterioration over years or even decades which marks a clinical picture of an inflammatory/autoimmune neuropathy.
http://www.digestivedistress.com/novel-rx
I was tube feeding for six years, the feeding pump, given sets and the enteral formula was subsidised by QLD Health as a public hospital patient. I only had to pay about $30 per week, doesn't Victoria have anything similar.Initially my Gastroenterologist mentioned the pump as an option, but the cost was insane with no guarantee that Medicare would cover it.
By the way, if you're looking for a good G.I. doctor in Melbourne who has a few clues about gastroparesis, Dr Geoff Hebbard at Royal Melbourne is recommended by several other Aussies on the Inspire forum where I also hang out. He has a private practice and a public clinic at Royal Melbourne.