Originally Posted by DavidHC

Thank you for the advice, En Bloc. Yes, of course, I agree with you about procedure, so I was asking more about this in case he doesn't want to explore any valuable paths. I also wanted to know what people think might be done, and should be done too, I suppose. Anyway, thanks.

I saw the rheumatologist today after a very long wait, and he ran some tests. He also took my history. He wasn't particularly attentive, but he wasn't bad either and I've seen worse. He spent about 30 minutes with me and seemed partly checked out. He did the Schirmer tear test and had me spit into a cup and then did something, I don't know what with some strip or something he had back there. Both tests were normal. He also ordered some blood work, which I had done right after the appointment. I'm not sure I understand them all, but I have an idea about some of them, and know others well. Here's the list:

Random glucose
Antinuclear Antibody Panel
AST
CK
Serum Antimitochondrial Antibody
Serum Smooth Muscle Antibody Level
Rheumatoid Factor
Antinuclear Antibody - Immunofluorescence
Cyclic Citrullinated Peptide Antibody panel
Protein, Plasma
Bicarbonate plasma
Immunoglobulin quantitation (protein electrophoresis)
Eloctrolytes, Plasma
Creatinine, Plasma

I think that was it. At the end of it all he said that there is no gold standard for Sjogren's and that I don't meet any of the criteria, so even a positive lip biopsy on its own wouldn't be enough necessarily to diagnose me with it. When I inquired how it was that I had so many of the symptoms, pretty much all of them he had listed on a board in his office, he said it could be that the autonomic dysfunction is causing those problems, so that it's being cause by the nerve damage rather than being an autoimmune attack on the mucous membranes as is the case with Sjogren's.

I'm not sure what I'll do going forward, and will at least wait for the serum results. There are many other rheumatologists here, as I live in a large city, so I could get a second opinion. I'm not feeling well today, so I'll sleep on it through the weekend, but my initial thought is that he may be right/that it makes sense to me. I can remember having severe dry mouth and needing to wake up all the time to drink water well before my neuropathy started. Well, sort of, since signs of neuropathy seem to also go back well before the onslaught of obvious and intense neuropathy last spring. I suppose I don't know what to think right now, and will await the results of the blood work.

One thing that annoyed me about the appointment and makes me want to see another rheumatologist is that aside from the blood work he ordered to check for autoimmune causes, he seemed to think it's not autoimmune or to not be particularly interested in looking for the cause. It's pretty obvious it is autoimmune, not just to me, but to my GP and my neurologist, and other physicians I've seen along the way, but he didn't seem to think so and/or be willing to look for the cause, since it didn't fit Sjogren's and one or two other things that he researches and treats. This was worrisome or a cause for concern. However, he did order a number of tests, so it's not like he did nothing, and depending on how those turn out, he may change his mind, I suppose.

He then went on to say that the neuropathy seems to have responded rather well to lifestyle changes - I told him about all that - and that it might heal over time and I should just go with it. In response I said that it was expanding and perhaps progressing, though that I couldn't be sure and in some senses it had improved. I said that if the cause is not found, then it could get worse or just not get better, but he seemed uninterested in that. That was frustrating. I didn't say anything after that and let him order the blood work. I didn't want to jump the gun, but his response was moronic. He's in fact the first physician in a host of them whom I've seen that has basically said that finding the cause is not important. Well, to be fair, I do think the cause is gut related, and so my own plan is to heal that now in various ways and see what happens. After all, I'm the only person who has done anything to heal myself since this all started almost a year ago. If I had listened to the physicians, I'd still be sitting around waiting to be diagnosed and not having changed anything. It's funny, despite being very impressed by how effective my personal intervention has been, going from being bed ridden to returning to work now, he seemed entirely uninterested in the details, not even asking me about the particular very much. But he did make a note or two about the diet and perhaps a few supplements I named.

Thanks again for those who sent me PMs and posted here, and who have helped along the way. Now I'm going to look up the blood tests I don't recognize.