Is it MS or is is SJoghrens? Im so confused

[Dejibo]

  Six almost seven years ago I was told I have MS. I have gone thru all the standard treatments and so forth (with the exception of a spinal tap) I was felt to be so positively MS that no spinal was needed. I injected their drugs for years on end (which made me feel so much worse!) and I have co operated with everything they have wanted of me...till now! I saw an MD who specializes in eyes and is a neuro person. She had a fit because I have no spinal tap on my record and has been chasing me quite hard by plastering it in my record. Now every MD I go to has questioned my original diagnosis.  I did see a Rhumy years ago and was told I have 2ndary sjoghrens. I have extremely dry eyes complete with punctal plugs. dry skin. vasculitis,dry skin, gastroparesis,  and several other big boy signs of SS, but my MS sx do not follow the normal path they would expect. My MRI hasnt changed in years. I dont have typical flares that they expect. I have brain fog and difficulty concentrating, along with anxiety, but since my mouth remains moist I have been told that it cant be primary ss...im lost!

I think I have been misdiagnosed. I have asked to re see the rheumy that dxd me with 2ndary to start with to see if she thinks this has escalated thru the years, but past that, im so lost about where to go. Any advice?

[Linda196]

If you had a documented DX of MS, the rheumy was correct in calling it secondary SjS, but if you were indeed misdiagnosed with MS years ago then the SjS is primary and could be causing all of the issues, including the neuro symptoms. The only difference in primary vs secondary is the presence of another autoimmune connective tissue disease.

Many of the markers that an MS diagnosis relies on are also present in SjS, even to some of the "o-bands" identified by spinal tap, but that is still the differential test that would hopefully sort the DXs out.

Our founders, Spring and Care, were initially misdiagnosed with MS/possible MS respectively, and their frustration with not "fitting" the DX, and wanting to find out more, ultimately led to their respective Sjogren's Diagnoses and this site.

[Friedbrain]

Holy moly, Dejibo, how scary that you've been living under the cloud of MS for so long!  That's a dang serious diagnosis and I'm really surprised that you were given it without the lumbar puncture confirmation! 

I'm no doctor, and only within the last month have I discovered that SJS and MS overlap so much, so I can't tell you anything definitely, but I can commiserate!  For comparison, when I started having problems ten years ago, I had an entire assortment of CNS and PNS symptoms, symptoms so random that nothing else fit other than MS.  I was MRId up the whazoo but I had no lesions; and I underwent TWO lumbar punctures (lucky me, they hit blood the first time or whatever, and had to re-do it) that were both negative for MS bands.  Not completely convinced-kinda stuck in "limboland"-my neuro had me do yearly MRIs for several years to make sure that no lesions showed up in the meantime.....nope.  They ended up concluding they didn't know what was causing the CNS/PNS symptoms (even consulted with Mayo, who said they couldn't add anything to the tests that had already been run on me).

Ironically, I had another MRI for a new baseline (for my new neuro) a month or two ago, right before the newest bout of PNS symptoms, and there were no lesions suggestive of MS, which is an ongoing relief to me (because it's in the back of my mind when I experience symptoms).  So....no clinical evidence of MS and my symptoms match up with autoimmune (SJS and/or others) and clinical (bloodwork) matches (SJS and others).  There's also autoimmune encephalopathies that, although not well understood, could also explain these types of symptoms.  Inflammatory attacks in the brain that are apparently quite debilitating. 

So, although my MS-like symptoms ten ys ago were "mysterious", newer/younger doctors are thinking it's more likely to be autoimmune (but not MS) in nature and are now treating it as such.  We shall see. Like you pointed out with the MS medicine, it seems like the only way to really know for sure is to try a medicine and see what the outcome is.  Although I didn't like that approach when my new rheum initially suggested it, I can see the benefit (vs just being sick!).

Good luck to you!!!

[rnathans]

MS is over diagnosed. I guess my first question is what did they base the diagnosis on. If it was an MRI, what exactly was on the MRI. Not all white matter lesions are MS.  You mention that all the MS drugs make you feel worse. What symptoms were they targeting and were these symptoms helped. Sounds like you need both a rheum consult and a second opinion from a neurologist, preferably an MS specialist to rule it in or out.

I sure empathize with your frustration and hope you find some answers.

[Sooki]

I second rnathan's advice.  I would recommend seeing a neurologist first and getting the MRI and lumbar puncture for MS.  If there is no evidence of that (or even if there is), then see a good rheumy (who in any case would want to know the MS results - not all AI drugs are compatible with demyelinating MS).  There are specific signs of MS and specific drugs for it.  If it's more autoimmune, then there are a variety of names your symptoms could fall under, but many of them have similar drugs.  So it may be that a rheumatologist could help your symptoms while figuring it out. 

Primary and secondary sjogren's are pretty meaningless distinctions.  The symptoms and treatment are the same.  I had primary sjogrens for several years.  When I got a lupus symptom, suddenly it was called secondary sjogrens.  Same thing.  Just an outmoded hierarchy of naming. 

There are several sources of saliva in the mouth, each with a slightly different composition.  So if, for instance, your cheek and inner lip salivary glands were under attack and the ones under your tongue not so much (my case), then you might have a moist mouth and still have a positive lip biopsy (one of the gold standards for Sjs).  Or the Sjs could be attacking your eyes but not your mouth.  A good rheumy won't be fooled and will look for what's actually happening. 

Hang in there.  Finding the right health care provider is sometimes part of the quest. 

[jazzlover]

MS is over diagnosed. I guess my first question is what did they base the diagnosis on. If it was an MRI, what exactly was on the MRI. Not all white matter lesions are MS. 

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Very true!!! I would make sure to get a test for Lyme disease through Igenex Lab. Other labs won't pick it up. (sometimes).. Lyme can cause white matter lesions and taking the drugs for MS would INDEED make a Lyme patient feel worse!!

You can easily have Sjogren's and Lyme. In my case, Lyme caused the Sjogren's.

[shellthebell]

http://www.bcm.edu/neurology/pdf/poster_msc_Sjogren.pdf

This report from Baylor talks about neuro involvement and SS-a. If I understand it correctly it says white matter lesions can be a part of sjogren's. I also know that the O-bands they look for in MS are present in other things, including Sjogren's. (I know this because I am positive for these bands and still have only a Sjogren's diagnosis.) I still have MRI's every so often to "check", but so far no changes for me. I really hope they get everything figured out with you soon! Right diagnosis means the right treatment and hopefully some relief for you.

[gurs]

I dont think the medical community is aware of just how much SS impacts our CNS system...I dont have MS, put have all the same issues.
I know I have Sjogrens..had the dry eyes, mouth, fatigue when I was little, and my labs, all confirm, but all my neuro tests dont show anything?

You also have to be careful on the lyme diagnoses. I went through this years ago and was tested positive via Igenex. I went to top
Lyme specialists and they mostly said that people with autoimmune can produce a false/positive on lyme tests. Its very, very, hard to diagnose..but, if you get diagnosed, you can always try the antibiotic therapy and see if it helps. My doc said that is the only way to tell?
While this is not the case for everyone, it was for me. I did some research and found an article about autoimmune and false positives on lyme testing.

It might be worthwhile to find a neuro ( think one wrote an article on this site) about how MS and Sjogrens can mimic each other. Frankly, I would search him out and get an appt? An expert sounds like they are needed? I would check out this article from this site and see this doctor if possibile..http://www.sjogrensworld.org/mandel.htm

Gursie

[Dejibo]

Thank you for the support. It has been a long road. I have had so many MRIs I cant count them. They all say the same thing. ALL my lesions are in the exact right spot for MS, but "most" MS patients show changes in their MRI thru the years. Mine has remained exactly the same. It still could be MS, but it could also be the migraines that are making my life misery. My eyes! my poor sand dusted eyes! I had an episode of optic neuritis and went BLIND! it was awful. They say that was "hallmark of MS" and no spinal was needed after that to confirm. Now years later ONE woman on a bad day (a neuro who specializes in eyes) put it on her report and this avalanche has followed. I am seeing a new neuro as my old clinic is no longer an MS clinic proper, but now a "neurological support center" I have episodes of dropped left foot, 2 documented reports of optic neuritis, and other than that I dont follow the normal cyclic pattern of the MS patient. I am Lyme negative 10x, lupus negative. While my ana was + it was a low result. I wonder what it is now. I do have arthritic stuff, stiff sore hands, raynauds and extremely dry skin with psoriasis. The more I examine it, research it, and mull it over I say I am sitting in the wrong category. I told the new neuro to PLEASE turn this on its head, lets figure out which came first the Sjs or the MS. if I even have MS.

I have tons of visual migraines and I hear that can happen from increased fluid in the head that is common with SJS. I get regular migraines as well which can make lesions in the same places as MS lesions. I went to have that new CCSVI thing done and the guy say my veins were clear. Then they tried to get an IV. I am always told how tough my skin is, and how horrible I am to get a needle stick on.

So many things are making me scratch my head and wonder. The CNS stuff shared by SJS makes it a quarter flip call sometimes when they dx folks. I am not sure about this spinal tap thing, but I will get the non invasive things out of the way first. All I know is I am miserable, and the MS world has nothing to offer, and only shakes their heads when I say things like my gastroparesis flares up when I dont feel good.

I asked my PCP for a follow up with the rhuemy that dxd me SJS 2ndary years ago.

Its nice to have a place to sit where folks get it. When I say "my eyes are sooo dry!" to the MS crowd everyone tells me how weird I am.

[prunella]

Dejibo, sorry you are so uncomfortable.
How will your treatment change if you get clarity about MS vs Sjs?