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.