Hi all,

I found out today that I'll be seeing the rheumatologist tomorrow, since there was a cancellation. I really don't know what to push for, what to ask for, which avenue to explore, especially if I get a lazy or unconcerned rheumatologist. I am seeing him for Sjogren's, but obviously that's not all he treats. So there's Sjogren's and that might lead to a lip biopsy, but there are other possibilities. At this point, a year in, I'm almost certain there is some inflammatory, autoimmune cause of my SFN and various other symptoms that I've described extensively on here. But I don't know what, and if we have a category for it yet. I'm really not sure what testing I could do that I already haven't done. I suppose I'm just asking if anyone has any suggestions, if you know my story. Thank you in advance.

Sometimes you should just let them do their job and NOT 'ask' for anything in particular...especially for the initial meeting. For the first visit, just focus on going over your symptoms (in priority order from most intolerable to least) in detail. Take a list to make sure you cover everything you want to (very easy to forget things in the moment if you know what I mean).

But even if you don't 'ask', make sure you cover the areas that you want to discuss...like lip biopsy, steroids trial to determine inflammatory, other AI testing, MCAS, etc. Find out his position on treatment options for AI related PN...like IVIG, steroids, DMARDS, etc.

You are well versed in your own body and many of the possible causes of PN, so just tell him about bothers you most and what you hope to achieve from his help. I have no doubts that you'll do just fine and hopefully you'll have an attentive doctor.

Although, 'asking' or pushing for specific testing may turn a new doctor off, it is important to find out what his testing and treatment approach will be. And during this discussion, it is wise to at least mention tests or treatments you would l like to address...like lip biopsy, labs, etc. Big difference between asking for him to perform a test and asking him his position and importance of certain tests...sort of leaving the ball in his court, so to speak. Hope this makes sense.

Hi David,

I don't have any sage advice however I do want to wish you all the best with today's exam! I truly hope you find some answers.

Warm regards,

Cliffman

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.

DavidHC, that sounds like a very comprehensive set of tests to me and I hope that something helpful emerges from the results.

Wait to see what the test shows, those test seems to be testing for RA, or LUPUS, dont jump the gun so quickly. well when i did "ask specific diseases, do this tests" i was basically ignored, and they immediately thought i was fabricating my illness(mentally) as they kept asking me for the answers to mystery illness, maybe that's the danger of going through this path. "AN" can also be caused by disease that are not autoimmune, some people on here have diabetes, cmt. Now that ive developed pain, instead of the pins and needles, im pretty sure its now related to my spine, because ive been having back pain, since "late dec" that comes and goes. wait for those test results.

Kiwi,

Thank you. I hope so too. Yes, it's quite extensive, which is why I thought I'd wait before making an decisions regarding how to proceed. The impression I got is that he will likely not do much else, if nothing emerges from these tests, but I appreciate that he ran them, and there are physicians who wouldn't even do these. So let's see what happens.

I wanted to add something: My only question now is whether his explanation for the origin, so etiology, of my almost perfect match of Sjogren's symptoms is medically accurate/plausible, or was he just bullshitting me, which physicians often do when they come up against a wall and aren't modest enough to admit it. That is, can autonomic dysfunction cause all the dryness to the mucous membranes and other Sjogren's issues? Perhaps I'll write a separate post about that when I get a chance. Trying to get out two papers to journals by Monday, which is why I also haven't had a chance to continue our conversation about vitamin D. Very soon and thank you for your posts on there, Kiwi.

Hi David. I'm sorry that, as an infrequent visitor, I failed to wish you advice or good luck with your rheumatology appointment. But your very comprehensive account is one I can relate to and also helps me progress a little further with my own very similar problems.

Like yours, my rheumatologist tested my eyes and salivary glands for dryness back in September. Neither showed positive and as my Ro and La antibodies were negative, along with all the others - he explainsd at the second visit that I do not have a connective tissue disease. I asked him how my diagnosis of RA some four years earlier, by another rheumatology consultant, fitted in to the picture. He shrugged and said it is all about EULAR criteria. It is possible to have seronegative (autoantibody negative) bloodwork and still have RA - but not the others. He explained that there are centres in the UK which need a certain amount of diagnosed and treated patients in order to qualify for research funding - so there are financial incentives for these centres to break with the criteria and diagnose seronegative Lupus. But not in Scotland where I live he says.

He was also unwilling to allow my diagnosis of RA to remain on the list of my conditions so it has been changed to polyarthritis (unspecified) now. This has meant that busy GPs in new practices I'm having to register with have assumed there is a psychological dimension to my symptoms - which they don't have time to pursue so they just suggest I have health anxiety and that I go online for wellbeing counselling. Well only one has suggested this so far but I live in hope (not).

I know that I did have RA/ inflammatory arthritis. I am very sure that the two consultants I saw would not have kept me on such potentially toxic immunesuppressant drugs had I not clearly presented with synovial swelling in my joints and tendons for a few years. But it has gone away now and the new doctor is unwilling to take their word for the RA or accept my photos as sufficient evidence - although he says he agrees I did meet the criteria then. But obviously I don't now.

Meanwhile no one has given me any satisfactory explanation for why my small fibre neuropathy appears to be advancing, why my gums, lips and nose and scalp all tingle constantly and feel tight and sore, why my eyes feel hellishly tight and dry and why I'm now dizzy and disorientated - can't cope with moving objects under my eyes, feel I'm going to fall if I look up or swivel or why I can't judge patterned flooring, steps, uneven surfaces. After a few years of intense pain my feet and ankles feel numbed and so do my hands and face to a degree. I still have pins and needles but otherwise I have the unpleasant sense that I'm slowly dissolving. I wouldn't use this description to a doctor though - have enough trouble getting them to take my symptoms seriously!

My own theory is that my problems are autonomic ie dysautonomia and either relate to a Mast Cell Disorder or to an unusually neurological form of Sjogrens. My symptoms conform most of all to MS but this has been ruled out by brain MRI and lumbar puncture just over a year ago. I'm not certain at all that I will ever find a neurologist or rheumatologist who will support the idea that I have an immune mediated neuropathy -let alone try and get me into some kind of modifying treatment again. I'm highly allergic/ hypersensitive to chemicals and unknown environmental factors have always triggered allergies since I was tiny. I have had severe allergic reactions to most of the drugs I've tried over the past five years so it will take a brave doctor to try me on more. This is why Mast Cell Disorders have been suggested to me by friends.

Have you researched these yourself at all yet?

I do have fluctuating inflammatory markers and paired Oligloclonal bands which suggest that something systemic is occurring but my rheumatologist thinks there must be other explanations for this that are non rheumatic. I don't understand why this isn't taken more seiously - especially because I have high blood pressure and mildly diseased carotid arteries and both my parents died suddenly and prematurely of heart failure relating to atherosclerosis.

I see a young neurology registrar at the end of this month in a large Scottish teaching hospital. As far as I can tell her special interest is in Parkinsons Disease so we may not be destined for each other as doctor/ patient. All I'm hoping for now is to be believed. After that I will try and broach the subject of treatments. I don't think continuation/ progression of my currently dissolving state is an option I can just accept.

Mat,

Thank you kindly for your thoughtful post, and no need to apologize. I'm sorry I haven't responded and will do so soon, but I'm running behind having gone back to work. I'm finding much less time for many things including this forum. Anyway, I just wanted to send you this link about the powers of bone broth, given your diagnoses of RA:

http://www.ncbi.nlm.nih.gov/pubmed/8378772

I'll write more soon and respond to your post. All the best in the meantime.