I've been to Mayo and I have Sjogren's and the nervous system damage. They diagnosed me with seronegative Sjogren's Syndrome. I also have Rheumatoid Arthritis and a seronegative spondylarthropathy.

If you do a search about Dec. 2006 you will find the results and saga of my trip to Mayo. I'm having serious problems with eyes and hands right now so I can't do the searching for you. I saw Dr. Michelle Mauermann and Dr. Peter J. Dyck. Dr. Mauermann was planning to start a study of Sjogren's from a neurological standpoint.

Billye

Hello---I am new to this blog and just happened to see this post about Dr. Birnbaum and your question about alternative treatments. I live near DC and recently attended Dr. Birnbaum's lecture at the Sjogren's Syndrome Foundation's national conference. I got to speak with him afterward and I have an appointment to see him in August (he is obviously very busy with his practice, because I'm having to wait several months to see him.) I am 56 years old and have had Primary Sjogren's since I was in my 20's but was not diagnosed until I was 35. My first cousin has it also. I have fibromyalgia, sleep apnea, chronic pain all over and extreme fatigue; also believe I have had some nervous system involvement for some time now, as I have had restless legs and some other symptoms for several years. Over all, however, I think I have done quite well using almost all natural therapies to treat myself for quite a few years. I have very bad side effects to just about any drug I take, and I believe that for the most part, when your immune system is
compromised, your body will probably NOT like chemical drugs!I have never had a lot of clinically significant bloodwork, however, I was diagnosed when I had a salivary gland biopsy done at Duke University's Sjogren's Research center that showed the lymphocytic infiltration which is positive for Sjogren's. If you read a lot of medical articles about Primary Sjogren's you will find that it is quite common to be "seronegative" but yet have serious complications from the Sjogren's, including neurological. What I wanted to pass along to those of you who are interested are 2 natural treatments that have especially helped me, one of which I just started 2 weeks ago but has already helped my nervous system symptoms of dizziness, imbalance, and tremors. After taking an herbal tea called Flor Essence for 5 days, which is the perfected version of a Canadian remedy called Essiac, those symptoms have already subsided.
After 13 days, I am experiencing more energy and sleeping better, and have had NO headaches since taking it!! Please research online to read about this remarkable herbal tea and draw your own conclusions! There is a fascinating book about the history of it called "The Essiac Report" by Richard Thomas which you can find in many book stores. Thousands of people since the
1930's have had remarkable success with this formula with many different conditions. I am very hopeful and excited about taking it! The other thing that has helped my eyes greatly is taking Evening Primrose oil (Omega 6 fatty acid) for about 14 years now. I read about studies in England that showed improvement in different aspects of tear functioning in those taking EPO, and after a year of taking it back then, my eye Dr. was amazed at the difference in my eyes. I no longer had the "staining" (dry spots) on my corneas. I am still taking it and had a complete exam and field vision test last week, and my eye Dr. here says my eyes look great! I can ONLY attribute it to the EPO, because my cousin has had numerous corneal transplants over the years and I have had NO problems that way. Be careful to balance it with taking Omega 3's also. Someone on this blog mentioned that "an ANA test decides" if you have Sjogren's Syndrome. That's actually not very accurate----an ANA (antinuclear antibodies test) can be positive for any number of autoimmune diseases, not just for SS. It is only one of numerous "clinical criteria" for establishing a diagnosis of SS. The salivary gland biopsy is still one of the most accurate ways of diagnosing it, as far as I know. I was told years ago that some people can actually have positive ANA's just because one of their parents does, and they may not actually have disease at all. The Sjogren's antibodies (SSA and SSB) are not even diagnostic for sure, because only about 40-50% of people with SS have them positive. Sorry this reply is so long, but I have studied much about Sjogren's for a couple of decades now (not that I'm an expert by any means), just have a lot to share, and definitely understand the misery that Sjogren's causes!

One thing I should add to my previous post is that homeopathics have helped me tremendously! The Dr. Frank's homeopathic pain spray and Immune Balance have helped my pain and stiffness, and I regularly use one called Restful Legs made by Hyland's Homeopathics. I had to have unexpected surgery on my neck 2 months ago and afterward had terrible burning pain over a large area (NOT the area the surgery was done on!) and after 5 days of taking a homeopathic called Nerve Fix by Natural Care (capsule formula), it was all gone and has never come back! (Quit taking it several weeks ago...)
I do not even take Ibuprofen anymore, as it raised my blood pressure and I've never had high blood pressure! (yes, it can CAUSE high BP!!) I even take homeopathics for headaches and they work as well as OTC drugs and are MUCH safer!!! It is fascinating to read about the long history of the safe use of homeopathics, the science behind them, and the extensive pharmacopia that still exists. Herbs such as Gingko Biloba (liquid) have helped my brain fog and unsteadiness, and there are many others as well that have helped. One thing I have read is NOT to take Siberian Ginseng or Eleuthero if you have SS, because it has been found to increase B cell proliferation, which researchers now believe may be one cause of exacerbation of autoimmune diseases.

I think the chance that I just stumbled upon this page may very well save my life.
At a time where I could not be any more desperate for help, I have found hope, and I feel like I want to cry.
I just turned 20 last month and have been struggling with my health for almost 8 years now. I am so exhausted from the suffering and emotional impact of feeling so entirely alone and helpless I can barely pull myself out of bed to do the simplest things anymore. I have been trying to stay in school partly because I am determined and party because I need to stay in school full time to keep my health insurance, but with one thing after the next coming up, the unexpected hospital visits, and on top of it the chronic consistant pain, I am on the verge of giving up on my life all together and can't help but feel that I am being completely robbed of all opportunity. I have not had the support from my doctors, family, friends, or professors that I need, and despite my greatest efforts am coming to the point where I may just end up being a failure all around. Instead of acknowledging that the symptoms are real and very well related to the autoimmune illness I am treated like I am either making it up or just have to live with it because thats the way it is and they dont have a solution for me. They do not even have a proper diagnosis, just a skin biopsy positive for collagen vascular disease, positive ANA, anti-ro, anti-la, elevated sed-rate and rheumatoid factor, a rheumatoid arthritis diagnosis that was taken back, family history of lupus MS and thyroid disorder, and a whole lot of symptom attribution to fibromayalsia (which from my basic understanding is their complex way of saying they dont have a fricken clue!). Well guess what, I have not been make\ing this stuff up, NOBODY WOULD EVER CHOOSE TO FEEL THIS WAY, I am not being weak and I need help, soon. I am very smart and I do my own research and found something called CIDP which can manifest in people who have sjogrens, which the doctors speculate is going on, and furthermore, this CIDP can also lead to something that causes muscle weakness, burning, and acute pain in the left shoulder, which has been my chief complaint lately. But, will any doctor ever listen to me? Will any doctor ever consider that I am suffering much more than dry eye? I am overwhelmed with joy thinking of the possibility that there is a doctor out there who gets it and how many people who are going through similar things. I do not feel so alone and I have new hope for my future knowing that all the effort into advocating for myself may finally pay off. I am sorry I sound so crazy, I have clearly been loosing my mind.

--doctors think you are making stuff up? Very sad.

Certainly, any of the ANA/vasculitic/connective tissue autoimmunity conditions can cause secondary neruopathies or myopathies, either through direct attack, or compression, or vasculitic insufficiency, or all three.

Take a look at (and bring to your docs!):

http://neuromuscular.wustl.edu/antib...tml#vasculitis

Hi everyone,

The wonderful Dr. Julius Birnbaum is now affiliated with a new Sjogren's Syndrome treatment clinic at Johns Hopkins, Bayview. The website for the clinic is available - Google the jerome s greene sjogren's center to find the URL. The clinic is supposed to be a one-stop shop for Sjogren's treatment, where you can see neurologists, ophthalmologists, gynecologists, ENTs, rheumies, and neuros who all specialize in Sjogren's syndrome.

I saw Dr. Birnbaum last month for what I thought was neuropathy and now may be diagnosed as some kind of myopathy (based on abnormal EMG but normal nerve conduction tests). He seems like a brilliant doctor.

I also see Dr. Baer, the lead rheumatologist. He is very sharp, too.

I saw him and was not that impressed. He did not even do a blood draw. Too bad, because when I got home, I had seroconverted to a highly + ANA. I travelled 1200 miles for a half hour appointment that was supposed to be an hour and half consult. One good thing came out of it, they recommended I keep my IVIG....I still had to fight for it. Maybe if you live out east and are going to be an ongoing patient fine, but I would not travel there. Just like Mayo, you may not learn anything more. I don't know if they dropped their consultative service, but I hope so.

I am not putting down Hopkins, they are cutting edge. It is just there is only so much you can do for Sjogren's with PN, and likely I was getting it already.

I don't think it is good to self promote on a forum full of people desperate to find relief.

The ANA or antinuclear antibody test can be low positive in normal people, but seldom over the 1:160 mark. 1:80 is considered +. It is the 1:80 level that is sometimes a false +. True, you can have seronegative Sjogren's, and I had it, prior to seroconversion. I had a + lip biopsy in 2000 and for sure seroconverted by 2006. It may have been much sooner, but I did not have an ANA done.

The antibodies of the ENA are more complex. They represent the most common antibodies for the diseases of RA, MCTD, SSc, SjS and Lupus. A certain percentage of people have + results, depending on disease, and if they have those ENA show +, with the clinical picture, and ANA pattern, they are considered to have the disease. This is the rheumatological standard, and this is why many seronegative folks can't get diagnosed even with the lip biopsy. Only 20-30% of SjS cases present with a + SSA, slightly more for SSB. SSc, perhaps 40-60% will show a + Scl 70. So it is not an exact science. Also, the ANA pattern of fluorescence hints at some diseases. Speckled tends to be non-specific, and homogeneous shows with Lupus, nucleolar and centromere more with scleroderma. Mixed patterns occur and hint at certain diseases. I say hint, because, it is not decisive. Again, it goes by percentage of people with a certain disease, who show a certain pattern.

High + ANA over 1:640, is always indicative of inflammation and if it persists and presents with a clinical picture, it is indicative of autoimmune disease. You won't find a high ANA that is false + or not clinically relevant.

Levels over 1:1,280 are very high and indicate autoimmune process regardless of ENA. We can presently identify only a fraction of possible antibodies, and that is why the ENA isn't always the answer.

A repeatedly high + ANA is sero-positive. If no known antibody appears, it does not mean there is not SOME antibody, yet to be discovered, that is causing the issue. A + ANA is seropositive.

A + skin biopsy for CTD likely holds great weight.

PN is far more common in connective tissue disease than once thought.

A good percentage of people with any autoimmune disease present with sicca and Sjogren's. Lip biopsy can be + in a number of diseases, not just SjS. It can even be + in Sarcoidosis and in Amyloidosis, to name a few. Even chronic anticholinergic use can produce a + labial gland biopsy. However, it is considered the gold standard for SjS. Rheumatologists may still want more collaboration in my opinion.

It took almost a decade, and now, I am lucky to have a neuro, GI and rheum who work together and seem to understand the issues involved with autoimmune disease. I also have issues besides neuro. I too have a myopathy, which is not uncommon in connective tissue disease. Connective tissue diseases frequently overlap, and most of us have an overlap syndrome. I suspect the diagnosis of UCTD will become more common as docs learn more about autoimmune disease. I understand how frustrating it can be to be sick and not have blood markers. I am thankful to have seroconverted. Fortunately my doc put a lot of faith in + biopsy, lip, nerve fiber and muscle, and a lot of faith in me.

Also, Sjogren's shares a gene with scleroderma, the SSCA1. It is possible they share more. In cases where SjS occurs with scleroderma (SSc), the patients are more likely to have PN, with more severe SjS and less severe Scleroderma (SSc).

SjS can require big guns. Scleroderma (SSc) even bigger. I am all for using natural products when possible. My green tea helps a bit, but, I think that if you are diagnosed with SjS or SSc, you need to really think about your options. Severe cases can cause major organ damage, so can the treatment. You have to weigh risk versus benefit. You can't fool around with this. Altho other autoimmune diseases are frequently co-diagnosed, only these two diseases share an antibody gene. SSc is a multifacted disease and involves more than one gene.

Also, it is not unusual for seronegative Sjogren's to very suddenly convert to a + ANA, and a very high ANA at that.

I have been very fortunate that I have people who understand what I am going thru, and people willing to go to bat for me for my treatment. It took a while, but, the signs of the disease eventually became undeniable, even to the skeptic.

The Sjogrens center at John's Hopkins is truly excellent. After 18 months trying to figure out what my disease was diagnosed as Sjogrens with neurological effects. I am blessed to have found them. While the treatments are no fun at least I have hope and doctors who understand what is going on.

My neuros have thrown up the hands with my neuropathy,, sensory,, and a working DX of Sjygrons,, and now want me to go to Mayo,, of course that is if insurance will let me, a older poster mentioned Dr. Dyker,, that is the neuro they want me to see,, any one have any experience with him

No experience with Dr. Peter Dyke but I believe he is one of the best when it comes to neurology.

http://www.mayoclinic.org/bio/10067639.html