Sjogren's neurological symptoms and Johns Hopkins

cyclelops · 02-08-2010, 10:06 AM

I think the powers that be, need to figure out what exacty Sjogren's means...they have about 10 different ideas.

Is it Sicca?? Then it isn't autoimmune or neuro, just plain idiopathic dry eyes, dry mouth? OR, drug induced? If so, why do lip biopsy on people on drying drugs? Why not just discontinue drugs for a while and see if the sicca remits?

Is it neuro? Caused by PN...Makes sense...innervation dead...glands don't work.

Is it inflammatory, and inflammatory markers are needed? If so, which autoimmune markers? Lip biopsy can be positive in many diseases. Makes sense, inflammation causing vasculitis....kills nerves and glandular tissue...hence dry eyes, dry mouth, PN all over, and other systemic issues.

The systemic Sjogren's scenario is far nastier than Sicca, and, then, I ask, is Sjogren's with + autoimmune markers, very similar to scleroderma sine, with which it shares a gene (for a certain ANA pattern)?

This is the ONE autoimmune disease they have NO handle on.

Mere · 02-15-2010, 11:10 PM

My neurologist seems to think that Sjogrens could be my reason for having SFN. Apparently, I fit the profile in age, sex, and symptomology (i.e., complicated migraine, etc.) I will be seeing James W. Russell at University of Maryland. He is the dept, Head of neurology and specializes in autonomic neuropathy. Thanks for putting the word out.

Mere

Mere · 02-15-2010, 11:11 PM

It is good to know if, God help me, I need a third opinion.

Mere

cyclelops · 02-16-2010, 10:39 AM

Yeah, they seem to be leaning now, towards Sjogren's with the PN offshoot....whatever it is, it is miserable....the worst of neuropathy, arthritis, and head rush....ugh. Not to mention GI stuff.

You may not have the + antibodies for Sjogren's and you can still have it...or what they call Sjogren's. A rose by any other name is a still a rose. (more like a thorn.)

Mere · 02-16-2010, 11:35 AM

In the past I tested negative for sjograns. I do however have dry mouth and my left eye constantly waters (which I have heard can be a sign of dry eye) - although I am not too clear on this. I was not aware that Sjograns can be apparent without a positive study.

My neurologist describes this Sjograns SFN condition as a pattern of chronic and long-term symptoms of complicated headache, arthritis and arthralgias, and SFN with an overlap of autonomic neuropathy.

He also mentioned that there are many autoimmune/inflammatory conditions that they simply cannot test for. Apparently, the testing is getting better and more specific all the time, but some conditions are not picked-up like others.

My rheumatologist once told me he that my autoimmune test results did not seem to fit into one particular neat 'box' (like lupus or RA) but that if they could test for that 'box' it would be overflowing with antibodies. That is why he says I have spondylarthropathy and connective tissue disease.

I suppose this is along the same train of thought.

cyclelops · 02-16-2010, 01:54 PM

Your docs sound like my docs. It is true that only a very small fraction of antibodies, including antinuclear ones, are identified on ANA and ENA. Lots of people have + ANA's and the ENA is negative...basically meaning that the antinuclear antibodies they have are unidentified. Lots of people fall into that category. Yet others, do not have antinuclear antibodies, at all, but possibly some other type.

I think the whole premise that they can separate out certain immune conditions will eventually fade away. Some people will have real defined clinical pictures but I think in general, most people, the far larger percentage will have the 'undifferentiated' type of autoimmune disease. Still others have teh antibodies and no clinical symptoms....they are perfectly healthy!

Given you have PN and they feel it is autoimmune, what are they going to do to treat?

Mere · 02-16-2010, 07:57 PM

Yes, go figure... I have been ill for such a long time and have had so many tests over the years. I may always be in that category labeled as undifferentiated. What I would like to know is how the SFN and autonomic neuropathy fits into this 'box' and what is next?

Cyclelops, do I understand your posts correctly as saying you have Sjogrens and Scleroderma both? And that the Sjograns was diagnosed from the lip biopsy? Are you seronegative for Sjograns?

Am I being too nosy? If I am, just tell me. I won't feel bad.

Mere

Louieb02 · 05-18-2010, 11:29 PM

Hi all from Australia,
I have been suffering with dry eyes, mouth, everything and sometimes overwhelming fatigue for about 8 years now but with negative ANA/ENA. Recently I developed PN and then severe burning pain in my spine. ANA/ENA and all associated pathology now positive.....
Had 5 days of Immunoglobulin infusions which didn't work and then fully investigated for underlying malignancy, which thank God was negative.
Have been on prednisone (10mg-30mg/day) for about 8 months now and am now also on 20mg methotrexate, but still no relief.
Unfortunately there is not a lot of info here about Sjogrens and ganglioneuropathic disease and I don't know just what the future holds for me. Anyone out there with any suggestions or who is going through the same stuff, it would be great to talk to someone who understands......

cyclelops · 05-19-2010, 09:25 AM

Oh, I do understand Louie....SjS remains poorly defined. Prognosis has eluded me totally. It is hard to make any plans.

Yes, it is some combination of ganglionopathy, and small fiber neuropathy, and eventually, seroconversion for some of us. It took 6 years for me to seroconvert.

You sound in the same boat as myself.

It seems that Sjogren's Syndrome is the 'fibromyalgia' of the autoimmune world.....there is no real agreement on what it is, what criteria really define it. The criteria are broad. If you have +SSA or SSB, you can definitely say you have this entity. I am neither, altho I meet all other criteria, which I don't put a lot of credence in. Sicca is caused by so many things.

In my opinion, it is an autoimmune neurological disease. I am on the fence regarding ivig. I won't do -mab drugs.....too untested, no real long term benefit documented and substantial risk. Prednisone for me is contraindicated due to huge family history of osteoporosis.....and I don't think I metabolize drug very well, which makes some of the chemo choices pretty risky.

I wish I could tell you there was something in the pipeline, but there isn't.

As far as 'slow progression', I am not so sure about that. I guess it depends on what is 'slow'.

It has been a huge challenge to maintain a positive attitude with this disease. Hopkins had nothing new to offer me over what my tertiary medical center was offering. My center is very up to date....albeit, some what reluctant to settle for the payments they negotiated with my insurer, which is leaving me in somewhat of a limbo right now.

I know, there is really nothing much they can do. It is up to me to survive, and try to salvage what quality I can from this situation.

hopeful · 05-19-2010, 11:51 AM

Quote:

Originally Posted by Silverlady

This was posted on the Sjogren's forum today. I truly hope it is a legitimate post. I'm posting it here in the event someone such as myself is looking for a place to get help when affected neurologically by Sjogren's.

"julius
Newbie

Posts: 3

Clinic at Johns Hopkins devoted to neurological complications of Sjogren's
« on: Today at 03:58:03 PM »

--------------------------------------------------------------------------------

Hi, everyone: Just joined the Sjogren's World Community Forum. Let me introduce myself. My name is Dr. Birnbaum----I have trained in both Rheumatology/Internal Medicine as well as Rheumatology. I work at Johns Hopkins University---this year at Johns Hopkins University, under the aegis of the Transverse Myelitis Center, I have started a Clinic devoted towards care of patients with neurological manifestaions of rheumatic disease. Although I had anticipated that the bulk of my patients would have lupus, we are seeing a wide spectrum of patients with neurological complications of Sjogren's disease. TPatients with neurologic complications of Sjogren's are often marginalized and dismissed by the medical profession, due to general unfamiliarity with the types of unique neurological challenges faced by patients with Sjogren's. Conditions which we manage include complaints of burning feet, problems with "autonomic nervous system", vasculitis, muscle problems. We especially focus on patients who are often misdiagnosed with multiple sclerosis, who may have inflammation affecting the spinal cord and the nerves connecting the eye and the brain.

I would like to also extend an invitation to anyone on this Website, if they have known or suspected neurological complications of Sjogren's, and live in the vicinity of Hopkins and/or Baltimore, that we would be happy to try and evaluate at this Clinic. This would include patients with similar "small-fiber neuropathies", other nerve problems, patients with spinal cord disease, etc. For further information on this Clinic, you can google the Johns Hopkins Web Site, and click on my name Dr. Birnbaum. Because of my training in both Rheumatology and Neurology, we are equipped to manage symptoms which straddle both discplines. This simplifies the diagnostic process for patients---instead of having to bounce and receive sometimes discrepant opinions between neurologists and rheumatologists, we are able to fashion a single, unified, and comprehensive diagnostic and treatment plan. Best, Dr. Birnbaum "

Billye

Hi Silverlady,
I can't believe Sjogrens is being discussed here today. I came on to ask if anyone knew anything about it.
I don't know if this will help anyone. I was seen by Kathy Burks and Dr. Polydeskius (unsure of spelling) in neurology at Hopkins yesterday. They believe that I have Sjogrens. I had a neg ANA a while ago but they want be to have a lip bioipsy and eye test (for tears) and did blood work. I have always had dry eyes and mouth. I assumed it was from the meds.
They did tell me that it is possible to have all testing come back negative and still have Sjogrens. They said depending on the results they would like me to go see the doctor that heads up the Sjogrens Clinic there. My guess it is Dr. Birnbaum.
Part of me wants a diagnosis so I know what I'm fighting. The other part is afraid to take the diagnosis even if the testing comes back negative.
I had a bad experience. I was dx'd with RSD and went through with the ketamine treatments because I was told there was a possibility I would be pain free. I never believed the diagnosis and should have gone with my gut instincts. I was desperate.
I finally went to see Dr. Raja at Hopkins. (specializes in RSD) He said there is no way I have RSD. Long story but that is how I ended up at Hopkins again yesterday.
Question for everyone. If everything somes back negative would you still go with Sjogrens diagnosis. I fell like I am fighting a ghost here.
I do have a positive small nerve biopsy. My symptoms do fit the profile.
Thanks,
hopeful

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