All of us want to know what we are fighting. TEN years ago I had a + lip biopsy....I STILL do not know what I have, other than small fiber neuropathy and a very high ANA.

I am not sure it MATTERS any more. Sjogren's has NO real firm diagnositic criteria. If you can be sero-negative, what do you really have....is it all the result of idiopathic neuropathy?

A lip biopsy is not all that conclusive...sure they can tell you, as in my case, that there is lymphocytic infiltration in your salivary gland. OK...that and a dime will get you a cup of coffee.

They are making a bigger mess of this Sjogren's thing...it is the disease du jour.

Right now to get the diagnosis....you need

1. A doctor who wants to make this diagnosis....100 doctors will give you 100 different diagnosis.

2. A + lip biopsy or +SSA/SSB, in my opinion, a + lip biopsy doesn't cut it.

3. And a bunch of sundry results that are not peculiar to Sjogren's.

Some people claim to have the disease and have neither...so what do they REALLY have? Maybe before settling on this label, it pays to wait to see what develops.

Treatments are not all that effective if you are profoundly sick, and they have yet to come up with anything for neuropathy in terms of 'treatment'.

There are a LOT of people in this boat...it makes me wonder why. It is beginning to look like a HUGE number of diseases, by any other names, have their roots in small fiber neuropathy.

If one maintains doubt that one really does have Sjogren's (as I still do), what does one gain by taking on the mantel of it? Does one really convince oneself of a prognosis? Nah, not really....one still keeps wondering.

Yes, one can tell people one has SjS and they look at you and either say one of two things, 'HUH?' or 'Dont they give you that Restasis drug?' There is no knowledge among people and some rheumatologists even say, SjS isn't linked to neuropathy!

Now, I doubt that....I think SjS is linked to neuropathy, but it depends on what criteria one uses to define SjS.

All autoimmune diseases are really all the same except that a certain percentage of people with specific symptoms develop certain antibodies....that said, a certain percentage of people with the same symptoms do not!

Autoimmune disease needs a real shakedown.

I think if you have small fiber neuropathy and a cause can be found and treated, GREAT! Frankly, I am not sure autoimmunity is all that treatable.

BTW, Mayo read my lip biopsy, so did 4 other institutions....and I have been to Hopkins. I should have done more sightseeing when I was there...it would have been worth the trip.

Hi, everybody -

Am new to this website and have small fiber non-length dependent sensory neuropathy diagnosed after sudden onset this past January.

Also was diagnosed with Sjogren's the next month, but so far only have sicca symptoms plus this SFSN, which has led my neurologist (at the same facility where my rheumatologists are) to go a little further after a normal brain MRI to also order bloodwork that included carnitine/acetylcarnitine.

It was abnormal, and this might mean a mitochondrial defect (hereditary) that causes neuropathy. The bloodwork will be re-done in a week after I've been off the fish oil capsules for that length of time because fish oil (also coconut oil, etc.) can cause this abnormal result. Bottom line: If the carnitine/acetylcarnitine is still abnormal, then it might not be SjS at all but the mitochondrial defect causing not only the neuropathy but also the sicca symptoms.

Best wishes,

Sheltiemom

hi cyclelops, i just saw your post from 5/2010. i'm on the fence about IVIg, too. it was prescribed in march [insurance approved 'till 9/2010]. i have small fiber + autonomic neuropathy. symptoms are mostly burning and it depends on the day -- it comes & goes. i'd like to try IVIg but i am concerned about the risks. i saw a doc @ hopkins [not birnbaum, although he is next on my list] and that doc felt that IVIg is relatively safe and i should try it. my neurologist in NY feels it can turn my condition around. i don't test positive for sjogren's blood test, but i do have elevated polyclonal protein, which suggests autoimmune or inflammation.

just wondered where you are in your thought process of IVIg and if you've decided to try it.

best,
kate

Hello i was diagnosed recently with sjogrens syndrome. I have had ongoing neurolgical issues from my spinal cord.4 years a go an intramedullary cystic lesion at c5 c6. last mri showed it grew for some reason to 8mm. time for a new MRI as 8 months have passed. But i want to go to john hopkins. ive had enough of the run around. In addition i also has an incidental fiding of a tiny calcified lesion. However 6 months later on a cat scan i just had due to severe face and head pain that is being reported double the size and with suggestion MRI follow up. HOW can i get in to see dr. julious burnboum asap. Thank you to anyone that can assist me. .....

Hello and welcome.

You're posting on a very old thread, so you may not get replies from the ones starting or participating in it.

I also have Sjogren's with neurological complications and it just so happens that Dr. Julius Birnbaum is my physician. Your best bet would be to read through the attached link about getting into the Sjogren's Center at Hopkins. It's a lengthy and detailed process to be accepted so follow the direction carefully. Contact Caitlin at the number listed (410-550-1887) and have her help you get started. You'll need to fax all your pertinent records and referral from your doctor for review and approval. Make sure to include the actual lip biopsy slides not just the report as Hopkins will have it re-read. Same goes for MRI's, CT's, skin biopsy (if you've had one) etc...send copies of the CD's/slides not just reports.

http://www.hopkinsmedicine.org/rheum...ns-center.html

It can take several months to get an appt...especially with Dr. Birnbaum. It requires some patience, but hopefully you can get in before the end of the year.

You know, treatment of neurological manifestations of Sjogren's can be extremely difficult...and in many cases there is no effective treatment. There has been some positive results with IVIG but it all depends on the type/extent of damage. I think you're wise to seek out the Sjogren's Center for help. Gook luck and keep us posted.

Hello - Glad to have stumbled on this site. I was diagnosed with Sjogren's about a year and a half ago. Then last spring I was diagnosed with Trigeminal Neualgia. However, I had weird symptoms that did not match up wit the TN. Saw a neurologist for the first time today. I was pretty scared, but the doc was nice. Will have an MRI and trying Gabapentrin (sp? I haven't even picked this up from the pharmacy yet) instead of Tegretol, as I had too much brain fog. I am trying to figure out all the acronyms on this site. So much to learn.

In particular I was wondering besides TN, what other neurological problems are associated with Sjogren's?

Hello McSpires,
I did see Dr. Birnbaum but haven't been back. The only thing that was positive was the eye test for Sjogren's. My neurologist still believes that is what I have. I don't know what to think. I have had many diagnoses. I have just about full body small fiber neuropathy. All my blood results always come back normal. My brain scans also show white spots that no one seems to know what they are. They call them unidentified white spots.
Your have definitely found the right site to come to. There are people here who a able to answer almost every question you may have. Best of all they are a wealth of knowledge concerning supplements that have helped a lot of us.

How did they diagnose your Sjogrens?