Recently diagnoised with Sjogrens

[mamom05]

I have been seeing several doctors to rule out MS, and now this neurologist is saying that i have Sjogrens.  My problem is that the blood work was negative, the first lip biopsy was negative, and the dr made me do another lip biopsy.  those results just say,"suggestive for Sjogren's syndrome". I so have severe sensory neuropathy in my legs and hands/arms.  I do not have dry mouth, but i do have dry eyes.  the eye dr plugged my tear ducts 3 years ago.  should i look for another Dr for a second opinion? I am starting to have pain and muscle spasms in my legs and all of these problems are getting worse fast, especially the neuropathy

[tricia]

Hi
Welcome ! I too have only recently been diagnosed and came to this board a couple weeks ago.  I don't know what to say about your current status except have you seen a rheumatologist? There are also test that can be done on your eyes the determine the dryness.  But I'm sure there are others on this site that will be able to give you much more information.

Just hang in there and people on this site are always ready to offer support and guidance and this has been very helpful to me.  Also, look around at some of the other posts, I found useful info there.

Hope all works out.
Tricia

[inga]

I imagine they tested you for antineuronal antibodies?

I have PN, but have a high ANA, with + lip biopsy....slightly different presentation.  I did not seroconvert to a + ANA for 6 years after the lip biopsy.

If you are able to, an academic hospital may have more sophisticated testing to offer you.  If it is autoimmune, you really want to get this treated to slow the neuropathy.  I am on IVIG.

[rnathans]

You sound very much like me-seronegative, lip biopsy initially read as negative, then re read by someone else who felt it was suggestive of Sjogrens. I have dry eyes but my main symptoms have been neurological-peripheral and autonomic neuropathy, spasticity and some muscle weakness. Initially I was on powerful immunosuppressants mostly because I developed severe gastroparesis, right now I am maintained on IV steroids 2days a month. If you have neuro symptoms that are progressing treatment is probably indicated. I have been told plaquenil is not strong enough to tackle neuro issues.

What treatment has this neuro suggested ? My opinion only- if you have a doctor that is willing to dx you with Sjogren's with negative antibodies that is a good thing. If he has experience treating neuro Sjogren's I would stick with him. I see a rheumy very rarely. I have a neuro who manages my treatment.

[Joe S.]

AI diseases are difficult for Dr's to identify. You will find a lot of good information on this forum. I have chosen to use CAM therapies because of other sensitivities.

[Scottietottie]

Hi Mamom 

Welcome to Sjogren's world from me too. There are quite a few people in here who have been dxd but who are sero-negative.

I hope you find the forum useful. It is certainly friendly and supportive.

Take care - Scottie 

[Patze]

Hi mamom05,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics and oodles of information to be found here!  If you don't find what you're looking for with the search engine, please do ask as there is usually someone about that might be able to help.

Like rnathans, I am sero negative for everything, but have a lot of symptoms including small fiber neuropathy that's been kicking up a fuss lately.  Now, I don't know if you're seeing a rheumy or not, but I'm thankful that the one I see is treating my symptoms (I also have Hashimoto's (diagnosed by a biopsy)/fibro/IBS and who knows what else is lurking).

Yeah, my hands and feet kill me some days, oh boy, the burning/pain/itching is not to be believed, and I sure hope that yours ends soon.

Yeah, the plugged eyes, both mine are plugged (double in the left eye, and single in the right), but like you, my mouth is not that dry either.  I don't know about you, but I've had some wicked problems with cavities, and breaking teeth over the years even though the mouth is not "dry" (see the dentist at least a couple of times a year, more often when I can remember!   ).

Again, welcome and I hope to chat with you soon -

Take care of yourself and I hope that you feel better soon!

Patze