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?

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.

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).

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 ?