"benign" MS or Sjogren's or ???

[rendean]

I have been followed for suspected "benign" MS for 2 years now. The original symptom seems to have been a tingling in my left arm some 9 years ago. Cervical radiculopathy was the dx after CT and EMG.  Fast forward to 3 years ago. New onset of complex migraines with blurred vision and left sided tingling and numbness.  2 months later, syncope resulting in 7 staples and hospital work up. MRIs show mutiple areas of white foci possibly from HTN, small vessel vasculitis or demyelinating disease. There is one lesion 3 mm in size that is oval in shape and perpendicular to the periventricular space.  With a history of sero- negative Sjogrens syndrome what would be the liklihood of MS versus Sjogrens when the sensory symptoms, including intermittent vertigo, are increasing but the MRI is not. BTW, an LP and EVP were negative.

My neuro is great and feels there is something going on but cannot pinpoint it. the MS specialist believes the one lesion with increased symptoms= MS. Any suggestions for further work-up?
Thank you for your time!

[rendean]

Hi,
Sorry you're on the same ride I am. Sjogren's is an autoimmune disease.  I had a rhemuatologist following me for a  couple of years for this. He offered Plaquinil which seemed to do nothing. My Sjogren's was only diagnosed clinically, meaning I do not fit the criteria because I have negative lab values (normal ANA, sed rates, SSa and SSb, etc) I do have test confirmed dry eyes, no lip biopsy has been done either. Any way, pasted from the "MS and Mimics" page from this site is this piece of information that might be helpful:

Sjögren's Syndrome is a chronic disease in which white blood cells attack the moisture-producing glands. It is a systemic disease, which means that it affects the entire body. Symptoms include dry eyes and mouth, difficulty swallowing and speaking, fatigue, joint pain, decreased sensation, and numbness. Sjögren's can plateau, worsen, or go into remission, and some people will experience mild symptoms, while others will be greatly debilitated.

Nerve conduction velocity (NCV) tests can be helpful in differentiating between MS and Sjogren's because nerve damage in MS is central, but nerve damage in Sjögren's is peripheral. However, this is not always the case. Occasionally, Sjögren's affects the central nervous system, causing cognitive impairment and spinal cord involvement.

"Some researchers believe that Sjögren's syndrome is somehow linked to MS," Burks says. "But this opinion remains highly controversial."

I hope this short explanation helps. Feel free to ask more if you need it. Good luck!

Rendean

[Lulu54]

Hi Rendean,

I'm not sure when Dr. Kantor may be along to answer your question and I certainly don't want to step into his area of expertise on this forum but you wrote something we all find very controversial - BENIGN MS.  

From what I know, the only sure way to know that MS is Benign is post-mortum during your autopsy.  We have no way of knowing how MS will progress in our bodies and it is impossible to say that it is going to do no harm, and be labelled Benign, until we are dead.

I'm curious, are you in the US or somewhere else?  I see lots of references to benign MS in the UK, where the justification to spend the money on DMD's follows very strict rules, governed by finances.  

I trust Dr. Kantor will be able to give you more guidance.
my best,
Lulu

[beboqueen]

i was dignosed with relaps and remiting ms 18 months ago after a massive episode followed by another episode, i was out of action for the best part of a year . two years earlier i had a bladder op in years following that i noted my concentration and memory often let me down  i suffered bouts of extreme fatiuge . thirteen years earlier i had balance  back and bladder problems  during my pregnancie. so my dignosis was thirteen years benigne ms wich has now  proggressed to    relaps an remitting believe me there is no such thing as benigne my memory is so poor it effects everything from my spelling constantly feeling sill at not being able to disscus the film iv just watched i couldnt tell u the name of it or who was in it ! i take the dinner out the oven and scrape it into the bin! i cant drive and question my self constantly these symptoms are very real and didnt happen over night so benigne isnt so benigne !  les x

[rendean]

Dear Dr. Kantor,
Thank you for your previous insight and answers to my questions. A second thank you for your willinginess and time spent to try to help us with medical questions that we fail to ask our neuros about.

I have an appointment at an academic center this week for a 3rd neuro opinon (God bless my neuro for never giving up! ) to try to elucidate a diagnosis.

I was struck by a comment in another post  by you that  4% of MS patients have migraines as their presenting symptoms as this was the case in my situation. I had recurrent vertigo and dizzines issues which were evaluated at the previously mentioned academic center and  deemed to be  an aura both pre and post migriane , even though I had little to no head pain.  

At any rate, I am taking your advice and requesting a lip biopsy to lay this quesiton of Sjogrens's to rest or to resurrect it as the etiology of my symptoms. Thanks for this advice .

One more question, Quix and I both referred to a study regarding Sjogens and MS patients and the  increased incidence of Sjogrens in Ms patiernts. Have you seen any studies directly comparing the MRI s of Sjogren's versus MS and the difference and similarity in their scans. if so, could you ppoint me in the right direction so I might read these studies firsthand?

Thank so much ,
Rendean

[Karen99]

I was diagnosed with MS in 2001 after having mild symptoms for nearly two years.  Then I  had a whopper of an exacerbation (the one and only, knock on wood) that has left me with fatigue and mild pain since then.  My MS has been called "benign" by a neurologist or two since dx.  I also have fibromyalgia.  Several neurologists have said that patients with fibromyalgia tend to have a  milder form of MS for unknown reasons.  Perhaps the fibro affords some type of protection, who knows.  

On another thread on the MS forum, there is much discussion on whether a person can have MS when there is no new lesions for long periods of time.  In my case, I went for several years without no new lesions, with no new symptoms and without DMD.   Early in dx I had an LP (at my request) without O-bands.

My point is, there are so many variables in each possible MS case.  I have heard from doctors that having another autoimmune disease along with MS is higher than seen in populations without MS.  Like many of you I had work ups for everything under the sun, because at first my symptoms pointed to a rheumatological problem (and it was) then soon after neurological problems got my attention real quick.  At that time there were a couple of lesions in the brain and a healed lesion in the cervical spine.  No new lesions until this year.  The "disease" of MS can follow a typical course, and others can have huge variables.  If you trust your neuro, rely heavily on their expertise.  

A diagnosis of MS can be clear cut and definitive immediately.  In other instances, it comes down to the expertise and experience of a really good neurologist.    

[rendean]

I, too, have read the same literature as you have regarding the Sjogren's and MS study. Have you seen any other studies regarding brain lesions from Sjogren's mimicking MS lesions given they both can have the same symptomology?

I would also appreciate Dr. Kantor's knowledge on this.

Thanks,
Rendean

[Quixotic1]

I have seen a article that stated that Sjogrens is much more common in MS than some other autoimmune diseases.  However, on further look, the study found that it appeared 3 to 16 times more often in PPMS patients.  Critique of this study was that the two diseases can so closely resemble each other that misdiagnosis (either way) might have been a confounding factor in those statistics.

I have also read repeatedly that autoimmune thyroid disease is more common in MS than most other autoimmune diseases.  It would be interesting to know if this is correct.

Recently I have read that while other autoimmune disease may occur together, this does not often apply to MS.  I think there is a increasingly common belief among patients that MS acts just like all other autoimmune diseases and it does not.

I would like to hear Dr. Kantor's knowledge on this.

Quix

[essdipity]

I had thought that having more than one autoimmune disease is common. Especially since autoimmune thyroid disease (Hashimoto's) is extremely common. I have that and MS, and so do quite a few others in the regular MS forum.

So it is not true that having one makes it more likely that you'll have another?

ess

[Dr. Daniel Kantor, MD]

A lip biopsy would be useful for the Sjogren's.

Is it possible to have more than one autoimmune diagnosis?
Yes.

Is it likely?
No.

[terrics]

It seems that you are living my neurological life.  Eg. white matter brain lesions, dx poss. benign MS.  My neuro and the M.S.specialist say that something neurological is going on but things don't add upi to a specific DX  .  2 separate MRIs both the same but different interpretations.micro vessel vasculitis on one the other interpretation white matter lesions consistent with demyelinationg lesions.  I had a neg MRA. and not one risk factor for strokes.  I think that almost everything neuro is difficult to dx, but I feel worse and worse with some o.k. days.

Sorry I wrote about me.  What is Sojogern's?  

terrics

[rendean]

Thank you for your answer and for takiing your personal time to answer questions for all of us. A couple of points for clarification. The syncope was worked up by neurology and cardiology. EEG, MRI, CT , stress tests, lab work of all sorts, Holter monitors...most likely explanation was an arrythymia which has yet to be captured for identification.


Is it possible to have BOTH MS and Sjogren's?
The 3 mm lesion  on the latest MRI is across the corpus callosum(?) does that have any significance?

Since all my labs are negative for Sjogren's, just symptomatic with positive Schrimer test, parotid infection and joint pains, would there be a test that would be more definitive to rule the Sjogren's in or out of the picture? BTW, small fiber neuropathy was mentioned more than once on this rollercoaster ride.

Any suggestions to bring to my neuro would be greatly appreciated!

[Dr. Daniel Kantor, MD]

The syncope (fainting) seems out of place and needs to be explained.

Sjogren's is a mimicker of MS and this is partly what makes your story complex.

White spots on the brain MRI may be caused by many things, including migraines in a quarter of patients.

[Lulu54]

Rendean -
off topic from this question, but here is the MS Hug discussion link ....
http://www.medhelp.org/posts/show/584143

[rendean]

Thanks for the comment Lulu. I am in the US. I, too, disagree with the term "benign" ms. My local neuro used it and some of his training was abroad but the head of the MS Center also used the term but did explain there is no way to know when the MS might progress. His defense of the word benign is because of the slow almost nil progression of symptoms until recently, yet he was considering treatment without a definitive diagnosis. Hence, my local neuro is sending me  for another opinion.