NeuroTalk Support Groups - Seeing the Rheumatologist tomorrow

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Seeing the Rheumatologist tomorrow (https://www.neurotalk.org/peripheral-neuropathy/233247-seeing-rheumatologist-tomorrow.html)

Quote:

Originally Posted by en bloc (Post 1205438)

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.

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).

Quote:

Originally Posted by Healthgirl (Post 1205434)

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.

So maybe you can ask for IVIG ?

Quote:

Originally Posted by en bloc (Post 1205332)

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??

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 ?

Quote:

Originally Posted by stillHoping (Post 1205456)

So maybe you can ask for IVIG ?

Insurance won't accept my criteria.

Quote:

Originally Posted by en bloc (Post 1205442)

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.

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.

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Newly diagosed – scared beyond belief