[Pyr2]

Ive posted before on this journey- suffering from almost 3.5 years of neuro symptoms both central and peripheral. I was diagnosed with an axonal and demyelinating neuropathy at NYU - I did have a muscle biopsy which showed changes but then I went to Upenn and they said the EMG was normal and they wont diagnose based on muscle biopsy. I had a skin punch which showed low normal fibers so maybe I have SFN starting...

Anyway, I ask about Sjogrens b/c I have been ANA positive (low) for years and now my SSA has turned positive. I also have super low complement 4 (its at a 5). Sometimes my complement level 3 is low too.

I know that SSA can mean other things but does it always mean autoimmune?
Does the level actually matter or positive is positive? Does it matter that I dont feel dry eyes or mouth?

My eyes keep tearing/welling up on their own and I hautonomic issues while sleeping - vertigo, nausea. I have burning mouth syndrome and constant little pricks in my lips and cheek and tongue too, like they are about to go numb. THe corners of my eyes burn and I feel pulling sensations behind them. I have HORRIBLE facial pain in my teeth and jaw. My head constantly feels weird pressure sensations - pulling, shifting, moving behind my eyes. My body buzzes, zaps, tingles, bee stings, feels numb, etc.

I had a spinal tap which showed oligoclonal bands which demonstrate autoimmune/inflammatory activity in my CNS. In short, Im a mess and have no idea whats going on!

Any ideas, anyone relate?

[mrsD]

Have you tried high dose Biotin (10mg a day) for your mouth?

I find it very useful, and there are some studies on PubMed with descriptions of using it for burning mouth etc.
You can get it at Amazon and Puritan's Pride (which is my source).

I used to get really chapped and painful lips in winter, but not since using Biotin!

[JoannaP79]

Originally Posted by Pyr2

Ive posted before on this journey- suffering from almost 3.5 years of neuro symptoms both central and peripheral. I was diagnosed with an axonal and demyelinating neuropathy at NYU - I did have a muscle biopsy which showed changes but then I went to Upenn and they said the EMG was normal and they wont diagnose based on muscle biopsy. I had a skin punch which showed low normal fibers so maybe I have SFN starting...

Anyway, I ask about Sjogrens b/c I have been ANA positive (low) for years and now my SSA has turned positive. I also have super low complement 4 (its at a 5). Sometimes my complement level 3 is low too.

I know that SSA can mean other things but does it always mean autoimmune?
Does the level actually matter or positive is positive? Does it matter that I dont feel dry eyes or mouth?

My eyes keep tearing/welling up on their own and I hautonomic issues while sleeping - vertigo, nausea. I have burning mouth syndrome and constant little pricks in my lips and cheek and tongue too, like they are about to go numb. THe corners of my eyes burn and I feel pulling sensations behind them. I have HORRIBLE facial pain in my teeth and jaw. My head constantly feels weird pressure sensations - pulling, shifting, moving behind my eyes. My body buzzes, zaps, tingles, bee stings, feels numb, etc.

I had a spinal tap which showed oligoclonal bands which demonstrate autoimmune/inflammatory activity in my CNS. In short, Im a mess and have no idea whats going on!

Any ideas, anyone relate?

Hi there, you have alot going on too. I feel for you.
I'm sure with all those results there is no doubt significant autoimmune activity.

I'm sure others on here with sjogrens can confirm that you don't necessarily have to have dry eyes/mouth. There is a website called sjogrens world and I've read some member threads - there are individuals who do not have the dryness.

With all those confirmed results, are you on any immune suppression /treatment? You definitely have enough evidence of autoimmune activity.

Im really surprised a muscle biopsy showing changes is ignored over a negative EMG. Is it possible that the biopsy does not demonstrate denervation but rather shows changes as a result of something else? Possibly inflammatory damage or connective tissue changes?

Have you had the lip biopsy to support a Sjogrens diagnosis?

I'm sure others with sjogrens on here will give you more detailed information.

I have most those symptoms you describe. (I have almost everyone's symptoms - I know) . I understand exactly how you feel with the facial nerve problems. My teeth are awful like you. and my nasal passages. My eyes burn and inner mouth lining and lips can inflame and get so dry. My nasal passage is horrendous. I understand, it's really hard going when its everywhere imaginable.

I hope you have a half decent rheumatologist and neurologist.

[mskari85]

A few things...

Have you considered having a lip biopsy for Sjogrens? That would be the real determining factor and given all the tests you've already had, it would be worth it at this point.

Given your spinal tap results and the nature of your symptoms, can you qualify for IVIG? I believe that would be the best course of action.

[JoannaP79]

[QUOTE=mskari85;1234281]A few things...

Have you considered having a lip biopsy for Sjogrens? That would be the real determining factor and given all the tests you've already had, it would be worth it at this point.


From Chronic Fatigue Syndrome to Fibromyalgia To POTS To Success: One Woman's Journey Through the Medical Profession - Health Rising


This may have been posted before. It's a great blog /article I read a while ago about a lady having all these Sfn / POTS symptoms. Finally diagnosed with sjogrens as the primary cause of it. Only the lip biopsy showed it.

[ElaineD]

Aside from the severe eczema and status asthmaticus/respiratory conditions I had as a child, the first sign of my Immune Disorder was Sjogren's-like Syndrome.

It wasn't really Sjogren's because I don't have autoantibodies enough to account for my various organs/sytems that have been attacked (lungs, bladder, ears, peripheral nerves, small fiber nerves). My Immunologist thinks my Immune Systems attacks with Cytokines not autoantibodies.

The best place to seek help for Sjogren's AND related PN and other conditions is at Sjogren's World:

Living With Sjogren's

Just log in and ask for help.

Hugs, ElaineD

[en bloc]

I have Sjogren's, and from what your relaying, it seems completely worth while to have a lip biopsy done. Many doctors would already diagnose you with Sjogren's, just based upon your ANA,, SSA, and low complement. But the lip biopsy would confirm it.

If positive, you would certainly be a candidate for IVIG.

[MAT52]

Originally Posted by Pyr2

Ive posted before on this journey- suffering from almost 3.5 years of neuro symptoms both central and peripheral. I was diagnosed with an axonal and demyelinating neuropathy at NYU - I did have a muscle biopsy which showed changes but then I went to Upenn and they said the EMG was normal and they wont diagnose based on muscle biopsy. I had a skin punch which showed low normal fibers so maybe I have SFN starting...

Anyway, I ask about Sjogrens b/c I have been ANA positive (low) for years and now my SSA has turned positive. I also have super low complement 4 (its at a 5). Sometimes my complement level 3 is low too.

I know that SSA can mean other things but does it always mean autoimmune?
Does the level actually matter or positive is positive? Does it matter that I dont feel dry eyes or mouth?

My eyes keep tearing/welling up on their own and I hautonomic issues while sleeping - vertigo, nausea. I have burning mouth syndrome and constant little pricks in my lips and cheek and tongue too, like they are about to go numb. THe corners of my eyes burn and I feel pulling sensations behind them. I have HORRIBLE facial pain in my teeth and jaw. My head constantly feels weird pressure sensations - pulling, shifting, moving behind my eyes. My body buzzes, zaps, tingles, bee stings, feels numb, etc.

I had a spinal tap which showed oligoclonal bands which demonstrate autoimmune/inflammatory activity in my CNS. In short, Im a mess and have no idea whats going on!

Any ideas, anyone relate?

Hi I have had much the same symptoms as you, progressing and changing slightly for about seven years now and had a lip biopsy last year which showed 100% positive for Sjogrens (i.e all five minor salivary glands removed were riddled with foci (lymphocyte clusters). I too had paired oligloclonal bands in my CSF. However I am completely devoid of tears, suffer unpleasant GI features at both ends, have burning lips and gums, cranial neuropathy, very diffuse small fibre neuropathy with Raynaud's phenomenon.

I have had a normal EMG and NCS but am starting to get blocked salivary glands and am struggling increasingly with a very dry mouth. But my neuro symptoms started well before the severe eye and mouth dryness. My punch biopsy a few years ago was negative - but my neurologist says this is not significant to her because of my symptoms, history of autoimmunity, oligloclonal bands and lip biopsy result.

I was previously diagnosed and treated aggressively for RA five years ago but this was probably misdiagnosed (Sjogrens often mimics RA with bilateral joint pain) and my Sjogrens is now thought to be primary. My ANA is a clear positive with a nucleolar pattern. There is quite a strong possibility that I also have Scleroderma so I'm going to be tested in April for this, using a nailfold cappililiary test. My ENA panel is negative, meaning that I have seronegative autoimmunity. My sed rate is often very high. I am eight weeks into taking Cellcept but I don't yet feel much benefit - but no side effects at all either which is a first for me.

Sorry I'm just on my way out but wanted to respond quickly. Hope this helps.