Seeing the Rheumatologist tomorrow
 

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.

Mat52,

I just wanted to add again that I'm sorry for your woes and appreciate you sharing your story. But also, regarding mast cells activation syndrome, that I posted this a short while ago, which you may or may not have seen: http://neurotalk.psychcentral.com/thread233192.html. The article is useful. And I myself have begun using quercetin. It may be too soon to say, but it may be that my allergic reaction or food sensitivities have minimized even in the last week. But I can't be sure, and apparently it may take a few weeks and in some cases months. It may be worth giving it a try, if you think that mast cell mediators are at issue for you.

new to this board
 

Hi David,
I briefly read thru some of your posts about your inability to get a diagnosis. I have autoimmune autonomic neuropathy, and it took me several years of seeing doctors until I found someone who knew what tests to run. I also take supplements to help my nerves heal. I am happy to share some of my experiences with you. As you probably know by now, there are very few doctors that know about or are interested in autoimmune autonomic neuropathy. Have you looked at the list of doctors on *edit* Look under "connect" to find a doctor, it might give you a place to start. I don't know what part of the world you are in, but this website lists doctors from all around the world. For example, my doctor ran a dysautonomia panel by sending my serum to Mayo: look up "Mayo dysautonomia panel" to see the long list of antibodies that can cause this. I tested positive for GAD65 antibodies. Suddenly my other doctors realized I didn't have "anxiety" causing my symptoms. I started treatment and I have been improving. But it is still a long haul. It is very important to be diagnosed because things worsen and spread. I wish you luck, please lmk if I can help, since it sounds like you may be on the same path as I am.
JJ

Thanks for your post, JJ. The link was edited out, so I can't see it. Feel free to send if to me via a PM, if that's possible. I'm early on in the process, with a good neurologist and only recently saw the rheumatologist as you can see. I'll know the test results next week.

Were you ever diagnosed with a specific autoimmune disorder? The problem is that if one isn't, then it's just a general category of idiopathic. I'm not sure if a physician, or many, are willing to diagnose one with autoimmune idiopathic unless they can pin down a specific autoimmune disorder. I have both sensory and autonomic issues, so small fiber polyneuropathy.

I'll look into that panel and see what my neuro thinks, when I see him again. Thanks.

I suppose I'm curious whether you were diagnose with anything specific, and if so, what treatment you're receiving exactly, IVIG, steroids, etc. So far, I've gone all natural.

Thanks David - I missed this thread and also not sure about trying any more meds without the thumbs up from my rheumatologist or neurologist because of all my allergies. Like you I'm quite sure I have an immune mediated polyneuropathy. I strongly suspect mine is a rare type of Sjogrens because of the previous non-erosive RA history.

But as you know getting anyone to diagnose and treat it with negative or equivocal autoantibodies, is another thing entirely. I'm not sure where you live? I've read JJ's comments with great interest and agree it's not something to leave because mine is advancing quite badly now and the autonomic issues are quite scary. I'm going to be starting off with a neurology doctor (not yet a consultant neurologist) at the Ninewells Hospital in Dundee, Scotland soon and also switching to rheumatology there but not too hopeful really now even though it's one of the largest teaching hospitals in Europe. The dizziness is rapidly worsening so I'll read your thread about Mast Cells etc with great interest - as I have this thread too. Thanks for your suggestions and good luck to both of us eh:hug:! Mat

Ps I've just read up about quercetin and realise now that it's not a medicine - it's a component found in apples and other fruit and veg. I'm already pretty wholesome in my eating habits but haven't gone fully Paleo yet - mainly because we are moving around all the time presently and it's hard to follow a new diet with restrictions under these circumstances. But I have been wheat free for five years, eat a lot of fruit and veg especially apples and I don't think Paleo would be a huge shift for me. They say now that the Mediterranean diet is the most helpful one for RA sufferers - maybe this is why my RA has disappeared? However I have friends who have been on a Paleo diet for years and are still very sick with autoimmune arthritis so although diet helps I'm not sure it's at the heart of my own problems. Keeping an open mind though and this was an interesting read - many thanks!

Mat, first off, here's the link to the article about quercetin with lots of links to studies. Quercetin is in apples and lots of other things, but in very low concentrations. You'd have to eat a lot of apples to get there. :) I take 500 mg each morning with breakfast, and have been for a week or two now. I can't tell if it's helping now, but it seems like it is.

The paleo diet, or a more ketogenic form, has been very helpful to me, but sometimes, perhaps often, there are exceptions, and one has to find what works best. There are some general rules that seem to apply to pretty much everyone, like sugar is bad, gluten is harmful, and so on and so forth. But the Mediterranean diet is pretty healthy, I think, as long it it's not too heavy on the starches, which it can be at times. But fish, olive oil, lots of vegetables, and perhaps even some legumes (not permitted really on the paleo diet) can all be very healthy. In my case, carbs and sugars, even fructose, are problematic, but I know that mine situation is gut mediated, so I'm not surprised.

Again, sorry to hear about your woes with the medical profession. I'm involved in my own struggle, but I have some good physicians here, so hopefully I'll get some answers. I'm young now, so I just worry about further degeneration as I age. One reason it's so difficult is that one doesn't know what to expect with this, especially since I don't know what is causing it. If it is my gut, and I can fix that, which I'm trying to do now, then I may be able to fix what has happened and if I'm at the autoimmune phase/it has already been triggered, then perhaps I have put it into remission, whatever particular disorder it is.

Good luck!

Autoimmune autonomic neuropathy
 

Hi David,
**

Anyway, if you can get tested for autonomic dysfunction, like a tilt table test for POTS, (if you are dizzy and have fast heart rate and low blood pressure) and there are lots of other tests, then autonomic neuropathy is a diagnosis. Autonomic and sensory neuropathy go together, I have both too. If you test positive for any one of the many antibodies that can cause it, like on the Mayo panel I referenced, then that is proof of an autoimmune cause of the neuropathy. Other blood tests, like sed rate, fibrinogen, and Factor 8 levels also can indicate there is inflammation. There are many treatments for autoimmune neuropathy disorders. I have been on meds, plasmapheresis, and IVIg. Rituxan infusions seem to be in favor right now, according to the autonomic neurologist I recently saw. You need high doses for, like, a year. I am supposed to start that treatment soon. The meds I have been on have helped me but not enough to stop it from continuing. My doctor said that as long as I still have any neuropathy, it is worth treating. Believe me, I took many many supplements to help quiet my immune system, and improve my leaky gut, etc, and they are not nearly as powerful as the meds. It can be a two-edged sword, because there are risks and side effects. But for me, the GAD65 antibodies I have can also cause other problems, like encephalitis. So getting their levels reduced is a priority for me that I couldn't do with the many supplements I tried. I am on 5 other meds to control the autonomic symptoms, to raise my blood pressure, slow my heart rate, and help bladder and bowel problems. Without them I am in bed all day. I also thought for a long time I had Sjogren's--I have SSA antibodies, but the GAD65 antibodies are more often associated with the autonomic problems, and autonomic problems can cause sicca symptoms. Look *admin edit* for a university affiliated neurologist who specializes in autonomic neuropathy. They are most likely to be able to find out what is going on with you. I have been to many neurologists, and finally the autonomic specialists were much more in tune with my condition. And I went EVERYWHERE!!!! If you are interested in supplements, look up Nutrinerve. It is a combination of supplements that have been shown to help nerves heal. I saw Dr. Vinik, who developed the supplement, he was excellent, but no longer has an autonomic neuropathy lab for testing.
JJ

Thanks, JJ.

I’ve already been diagnosed with SFN via a skin biopsy and we know that I have autonomic dysfunction, so testing won’t do much. My neuro just went on the basis of the biopsy and my symptoms. The suspicion is that it’s autoimmune, but we’re not sure. There are no markers yet, but I can perhaps have some further testing done. The thing is that even if I have a given marker or two, indicating possible autoimmune and/or inflammation, it still won’t be as useful as a diagnosis of a specific condition. SFN and autonomic dysfunction are symptoms. Physicians where I am are less likely, perhaps entirely unlikely, to treat with just some generalized autoimmune and/or inflammatory markers. But I’m leaning more and more toward heading to the US and getting tested at some major center.

As for treatment, I would need a specific diagnosis to have it done here, but perhaps some markers would help. At this point, things have no gotten much worse, and there has been some improvement, all thanks to a complex of supplements and a specific paleo ketogenic diet. My situation is almost certainly gut mediated, so before taking any serious pharma treatments, given the improvement I’ve seen naturally so far, I am working on healing my gut. I will see what comes of it. But I’m still pursuing a diagnoses of the cause of my SFN, which is both sensory and autonomic.

I wish you good luck with the new treatment, and appreciate the information about the testing at Mayo. I’ll print that and show it to my neuro when I next see him. Perhaps some day I’ll need some pharma treatment, but so far things have not escalated to that degree. But I do want to see if I have a known condition causing it.

David

I just wanted to post an update. I heard back from the rheumatologist and unfortunately the tests revealed nothing. There was no sign of autoimmunity or inflammation.

At this point I haven't decided how to proceed. What I'm thinking is that I should see my neurologist first and see what he thinks. He is still planning on sending out a sample for DNA sequencing for TTR familial Amyloidosis. But I don't believe much will come of that. As I've said before, if I have amyloidosis, it's almost certainly acquired not inherited.

I could push to see another rheumatologist, actually very easily via my GP if not my neuro. I could push to have a lip biopsy done, even though I have no other evidence of Sjogren's. I could push for this, even though I don't like how invasive it is, because despite not having an objective signs, so as far as testing goes, I do have pretty much all the symptoms. Now, here's a question for anyone who can answer it, and here I'm thinking of En Bloc and Glenn in particular. Is the rheumatologist correct that all the Sjogren's symptoms I'm experiencing, the dry mouth, the itchy eyes (also the feeling that there's something in my eye when there isn't), difficulty swallowing, cracked tongue, dry throat, dry lips that also peel and more can be the cause of autonomic dysfunction?
This was what he suggested when I asked him why I have all these symptoms, if I don't have Sjogren's.

Usually I don't care very much for a diagnosis that only results in a need to take powerful and dangerous pharmaceuticals, but with Sjogren's it can be a dangerous disease, so at minimum I would need observation. I would also like to know if my clearly gut mediated condition has actually led to not just generalized inflammation and toxicity or infection, but actual autoimmunity.

However, even if I do have the lip biopsy and it is positive, what I came to understand in speaking with the famous rheumatologist I saw is that it would not be sufficient for a diagnosis, that it is not the gold standard and that I would need more evidence. I'm not sure if that's the case, but he did emphasize that there's no gold standard for Sjogren's.

Also, En Bloc, if you think I should post this elsewhere too, perhaps on a Sjogren's forum say on this site, please let me know.

Thanks in advance to anyone who knows about all this and can offer some advice.

He might be right. The dryness could be caused by inflammation in the glands (as the salive and lacrimal glands) or in the autonomic nerves (mainly parasympathetic) that innervates these glands.

Rather than instead - you could post this as well on the Sjogren's World, Livimg with Sjogrens forum. I know there are others who use both but without a diagnosis of SJS I think using both is very helpful.

David I'm struggling with many of the same questions as you ask re Sjogrens or other possible causes of neuropathy. I too have trouble swallowing, GERD, dry eyes and nose, an unpleasant taste, lost of taste and smell and inability to sweat. Are these the drying up of the mucous membranes as part of a connective tissue disease or are they symptoms of autonomic dysfunction? To me seronegative Sjogrens seems more likely because it would explain the autonomic and sensory issues. I also have had RA and have Hashimoto's so a degree of autoimmunity has been confirmed. But without autoabtibodies the chances of finding a rheumatologist who would treat this is small now. I hope you have more luck than I'm having in tracking down a diagnosis you feel is correct.

Hi David

You may find this link useful. When someone tests negative for Sjogren's but has the dry eyes/mouth etc it is sometimes referred to as sicca syndrome.

http://info.sjogrens.org/conquering-...Sicca-Syndrome

This next one is a rather technical article on autonomic conditions:

http://jnnp.bmj.com/content/74/suppl_3/iii31.full

Hope this gives you some clarification - and hope it's not too heavy reading.

David,

As some others have already said in reply to your latest post, YES, dryness of eyes/mouth can occur with peripheral neuropathy. But your description would be a severe case. Sure, it can cause these symptoms and many with PN have eye/mouth dryness, but I have not heard of it being this severe with cracking tongue or peeling lips along with dryness so bad that it effects your ability to swallow....unnless of course, your PN is likewise at severe levels or end stage. The type of symptoms you describe are really more common with Sjogren's. Do you have joint pain or profound fatigue...both of these are also common with Sjogren's??

The rheumatologist you saw may be famous, but just as in any condition, there are varying views among physicians on the particulars involved in Dx. Being that up to 40% with Sjogren's have negative labs (called sero-negative), the lip biopsy does end up being the 'gold standard' and provide enough evidence for a proper Dx...as it confirms the presence of autoantibodies in the salivary glands along with visually seeing the inflammation and fibrosis it causes. The lip biopsy looks for actual lymphocytes, histiocytes and plasma cells present in the minor salivary glands...which otherwise should NOT be there. If there is more than one focus (an aggregate of 50 or more of the lymphocytes, etc), then there is NO denying the Sjogren's....no matter what your labs show or doctor says.

But let me also say that the most common cause of dry mouth/eyes is NOT Sjogren's or even PN...it's medication! Seriously, so many medications we take can have this side-effect. SO first, go through each and every medication, OTC supplement you take and see if your symptoms can be explained by something you take. Then, it is not unreasonable to discuss this with your neuro for his/her opinion on the PN causing this level of dryness in your particular case. I would at least ask for his/her thoughts on doing the lip biopsy to rule out the Sjogren's completely (if it shows NO fibrosis or foci present). It also doesn't hurt to talk with another rheumatologist for another opinion. There is another test for Sjogren's...a new one called Sjo by a company called Immco. There are also Schimmer's test for dry eyes, spit tests, ultrasound, but they are not as popular for Dx on their own...without some other test or lab confirming Sjogren's.

Hope this helps.

specifically anti-cholingernics, can cause it, i experienced with diphenhydramine. Autonomic neuropathy is one cause of those symptoms as well.

I experienced it with Amitriptyline (worsening of Sicca) and Duloxetine/Cymbalta which dried my saliva ducts up significantly. Since coming off most medications I'm left with Dysguisa and dry eyes but neither seem to show up in routine tests anymore, since dropping these medications. Which leaves me thinking that the bad taste, changes in bowel habits/ digestion, itching (scalp and back) and Sicca must all be autonomic rather than the drying up of mucous membranes as you describe for yourself?

What I'm still very unclear about is that PoTS/ Dysautonomia can be secondary to Sjogren's amongst other connective tissue diseases. So how can we know which type of specialism these come under? Is it possible to have a type of Sjogrens that mainly presents neuropathicslly/ neurologically?

The neurologist who took took my sfn biopsy could not find any cause for the nerve damage and only had my high ANA to work with. She was determined that it must be sjogrens.

I still have a numb spot in the middle left of my bottom lip from the lip biopsy over a year ago. My test came up "borderline" or "unequivocal". The rheumatologist and neurologist discussed my case and decided that I should try Plaquenil.

That was it!
So.. even if Sjogren's is the cause of nerve damage all over my body, all they are going to offer is Plaquenil to take every day for the rest of my life.


I haven't tried it yet because I told think I have Sjogren's. I don't have joint pain. My pain is in the innervation of muscle, joints, skin, etc. So, my joints hurt, but it is not the actual joints. I don't have fatigue, it's that my nerves literally won't let my muscles do what my brain wants them to do.
As far as the dry eyes, I believe it is my autonomic system causing that. On the days I have less autonomic symptoms, my eyes are not as dry.

I don't have any advice, just though sharing my situation might help.

MAT,

Yes, anticholinergics are number one on the list of medications...and Amitriptyline does have some anticholinergic effect, so it would be expected that you have this side-effect.

Autonomic neuropathy is a subset of PN, so I didn't list it separately, but yes, it can cause the dry mouth as well. But just as I stated above, the dry mouth/eyes would typically not be that severe unless other aspects of the neuropathy (peripheral or autonomic) are likewise that severe. I just don't think you'd have cracked tongue and peeling lips so bad that you can't swallow properly and not have severe BP instability, POTS, or severe PN pain at the same time. Dry mouth/eyes IS a symptom of PN, but not a prominent one, I guess is the best way to describe what I'm saying.

Actually, you are exactly right about 'types' of Sjogren's being different and having one that presents with neuropathy. The type of Sjogren's I have has specifically attacked the dorsal root and autonomic ganglia, so I presented with neuropathy symptoms before the typical Sjogren's symptoms. They call it Neuropathic Sjogren's.

Actually, Plaquenil does NOT treat neuropathy...even in Sjogren's. Plaquenil is a DMARD (disease modifying anti rheumatic drug) that helps with the fatigue, joint pain and other side effects of the Sjogren's...not neuropathy. It's not going to help your neuropathy at all. Neuropathy from Sjogren's is typically treated with IVIG or other typically neuropathy treatments.

Honestly, you should see another doctor. The information you have been given is incorrect in regards to treatment options for neuropathy from Sjogren's.

How were they able to determine that the dorsal root and ganglia were attacked? Just wondering because I can't find a doctor who will go into that kind of detail.

I had a special MRI/MRN at Johns Hopkins in 2008. The MRI was designed with a special protocol to look directly at the dorsal root ganglia. They could 'see' bilateral enlargement and enhanced signal consistent with ganglionopathy.

I don't know if it is widely available at this point (it was not back in 2008). one would hope so after 8 years.

I agree - I think I'm much more like you in the way my neuropathy is progressing than a typical Sjogrens sufferer Enbloc. I don't have the dry mouth now and I don't actually have dry eyes any longer since coming off those drugs I mentioned -but like my scalp and back they feel dry if this makes any sense? I have a frantically itchy scalp and a spot on my back and these dry eyes that feel as if I have no tears.

But when my optician tested my eyes he said there didn't seem to be any particular sigh of blepharitis and when my scalp has been checked I gave no sign of dandruff, skin doesn't look especially dry on my back and yet the itch is insane! And, having suffered from severe eczema and allergies and blepharitis all through the first four decades of my life I know the difference. The only reason I think that I do have the neuro type of Sjogrens is historic. I have such a long history of dryness and then two years of synovitis/RA that it seems more likely than some random idiopathic neuropathy.

It is VERY confusing but I think you are very right to distinguish between the severe dryness DavidH describes and the dryness caused by PN/AN/ sensory polyneuropathy. I would love to be offered IViG for mine I must say. I did ask but, like Healthgirl I have been told that the only treatment for Sjogrens is Hydroxichloraquine/ Plaquenil - which I took for 18 months but finally couldn't tolerate (urticaria/ angioderma).

So maybe you can ask for IVIG ?

I had severe dryness (got punctual plugs in the eyes, had nose bleeds, had to drink to swallow dry food, used tons of eye drops and gel, moisturizing creams, etc.) with negative antibodies and negative lip biopsy. When it started I had fatigue and joint pain and neurological peripheral problems POTS (not severe), Adie tonic pupil, trigeminal neuralgia.
15+ years later the antibodies for Sjogren are still negative, the dryness improved greatly since I started a healthy nutrition, and a few years ago I got SFN.

So it seems I got something neurological autoimmune, I don’t know if I have got seronegative Sjogren, or that my dryness is affected by my autonomic neuropathy.

Are there any tests that can prove that the dryness is caused by autonomic neuropathy ?

Insurance won't accept my criteria.

And you know whats funny? Well not really funny, but I'd rather laugh then cry... The doctor who wants me to take plaquenil is a neuromuscular neurologist who is the one who does the diagnosing of SFN at Columbia NYC. My symptoms are all 100% neuropathic. I have no swelling of joints or anything that tells me I would get relief from Plaquenil as far as what I've read from other Sjogren's patients. So thanks for this...and sorry David for the hijack.

Following this one
 

Newly diagosed – scared beyond belief