I don't see many on this forum that have the systemic end of Primary Sjogren's, so sometimes I am a little lost as to what might be Sjogren's and what might be something else. Until I ran into this website, I had no idea what the difference was between Primary Systemic Sjogren's and MS.
The name of the website is scarysymptoms.com. They have over 2,800 articles on lots and lots of subjects. The article I found was one that told the difference between Sjogren's and MS, and even mentioned the essential tremors as a possibility for Sjogrens. You can also type in symptoms or diseases. So I typed in Dry Mouth and Sjogren's came up.
Thought I would pass it on. Hugs! Judie
Judie:
I see your query...and might I suggest (remember I am a patient and know no more than you or most SjS patients just living our lives as best we can) you might want to go to the sjogrens.com to read more about Sjogren's itself. SjS is, by its nature, and that of other AI diseases, is systemic. As I understand "systemic" the word system implies/means: throughout the body/system which is being attacked. In our case, it is the body..and our white cells are gobbling up the body's mucosa. I hope others will confirm or correct my understanding.
MS is yet another AI disease. It is a demylenating disease which attacks the insulating covers of the nerve cells. Because AI diseases run in "packs" it is not uncommon for SjS positive persons to have MS as well. But as I understand the two conditions, they are generally thought of as "stand alone" AI diseases. I am embarrassed to say I have forgotten most of what I knew. I have a niece in her mid 50s who was diagnosed at about age 17. She has lived a mostly normal life...and now in her mid 50s. I also have a family friend's daughter diagnosed in early 20s. Now in her mid 40s she too has lived a normal life. I say "normal" as any AI disease requires regular physician visits and monitoring. I consider MS an AI systemic disease as I understand the definition of systemic. I invite corrections if I am incorrect.
I hope this answers your question and not lead to any confusion.
Have a blessed Easter.
c3
Dear CC, I did not have a question. According to this article I read on scarysymptoms.com, it considers "systemic" Sjogren's as being anything outside of the sicca symptoms of dry eyes and mouth. The following people contributed to this article:
Sjogrens.org
Sjogrensworld.org
mayoclinic.com
Ali D. Askari, MD.
Professor of Medicine - Case Western Reserve University
Chief, Division of Rheumatology - University Hospitals Case Medical Center
Director, Rheumatology - University Hospitals Case Medical Center
In an article done by the Sjogren's Syndrome Foundation, at least seventy-five percent (75%) of patients with primary Sjogren's do not have neurologic symptoms, as best as they can tell. The amount of patients with primary Sjogren's neurologic involvement is somewhere between 20 - 30%. 10% of patients with primary Sjogren's have peripheral neuropathy. They don't know how many have central nervous system involvement versus peripheral nervous system involvement. Symptoms can involve an aspect of neurologic function - brain, spinal fluid, spinal cord, peripheral nerves, cranial nerves and muscle.
I am a primary Sjogren's patient with a positive SS-A. No SS-B. Having an SS-A antibody present can increase the frequency of involvement of a variety of target organs in Sjogrens.
I would prefer to think positive and hope that my SS-A positive primary Sjogren's will never develop into MS. Though I know that many who have MS can develop SJS more readily. It is a relief to me that Sjogrens can mimic MS, including muscle tremors and numbness. It reduces my stress and anxiety by quite a bit.
That is why I put this website up for those who have questions about the systemic end of SJS, that they have hope that it can be only that, and not Parkinson's or MS.
I wish you a blessed Easter, too! Hugs, Judie
I am surprised at those percentages as I have read over the years that the neurological symptoms are really a lot more common than people think and often these symptoms show up prior to other symptoms. Depends on who you read I think. Irish
Oh gosh Judie...
So sorry....saw this message that night on my phone---and answered the next a.m. without reading it again (and apparently more fully!) Tht you were wondering. btw: thanks for the info.
c3
I thought so, too, Irish. I guess it does come down to who you read and what they think. I was just glad to find this! CC, it's okay! I think it needed more explanation anyway. Hugs, Judie
Sytemic Sjogrens/Neurologic (CNS) symptoms..
During a recent office visit with Rheum, Dr. stated, to the effect, that some patients present with Neuro symptom first.
There was for me, a sense of validation hearing this, as sicca while present, were really the least of my problems. I was so over hearing by some Drs. "Sjogrens, Sicca" while functioning at 30%.
I was determined disabled in my early 50's. No hearing, nada.
Upon my own research I did read estimates that that of the 20% of systemic Sjogrens patients, about 5% of those present with Neurological symptoms. The estimate of USA pop with a Dx sjogrens is around 3mil.. then take it down to its' parts, so we are not that common and those with Neuro even less so.
Drs. really with the rarity and low incidence of meeting patients in our cluster have no training beyond 'sicca' .. so often first impression is MS (as in my case and MRI, etc.). The process is often time intensive. Thankfully there is vetted information on the net.
Here is information I originally read
http://robertfoxmd.com/SjogrensByFox/The_Neurological_Manifeststions_of_Sj%C3%B6gren's_syndrome-Diagnosis_and_Treatment.pdf
https://sjogrensworld.org/index.php?PHPSESSID=912a495f0db956184bd7268796d8465f&topic=22583.0
Since I lived in heavy deer populated area at first I was tested for Lyme (I was short by one band for treatment).. here is an article which mentions bands as well
http://www.medscape.com/viewarticle/821884_3
Scary.. hmmm
For myself, there is an article that breaks sjogrens into 3 stages.
Since I have neuro, salivary damage, vasculitis, I am in stage 2.
How long does one stay there?
No crystal ball for Drs nor patients.
Drs monitor for lymphoma and (low-present) thyroid anti-bodies, and organs.
Keep a symptom diary.
Take concise outline to Dr visit (one for Dr and one for you)
Then hit the points.
Outline helps you learn your triggers as well.
Hi,
I think I am one of the really weird patients. I have DX with Primary Progressive MS and Primary Sjogrens. I have been to the Mayo and the University of Minnesota. Multiple MRIs, biopsys, blood tests etc. and because of my pattern and location of my brain and spinal cord lesions plus my spinal tap results they still believe I have MS along with Sjogrens. Makes it tough cause when I have a new issue pop up the neuros say see the rheumatologists who say see the neuros.
Quote from: quietdynamics on March 27, 2016, 08:31:43 AM
Upon my own research I did read estimates that that of the 20% of systemic Sjogrens patients, about 5% of those present with Neurological symptoms. The estimate of USA pop with a Dx sjogrens is around 3mil.. then take it down to its' parts, so we are not that common and those with Neuro even less so.
The percentages really vary a lot, depending on the study. Here's a Medscape article which states that 80% of primary sjögren's patients are systemic
Quote
http://www.medscape.com/viewarticle/829972_3Systemic (http://www.medscape.com/viewarticle/829972_3Systemic) involvement has been evaluated using the organ-by-organ ESSDAI definitions in nearly 1000 Spanish patients[11] and in more than 80%, the score at diagnosis indicated systemic activity (score > 1), with the joints, lungs, skin and peripheral nerves being the most frequent organs involved; cytopenias, hypocomplementemia and cryoglobulinemia were the laboratory abnormalities most often associated with systemic Sjögren's.[11] Seror et al.[12] found that 70% of patients had a history of systemic involvement at enrollment, and Baldini et al.[15] found severe systemic manifestations in 15% of patients, especially those with an immunological profile suggestive of B-cell activation. These recent multicenter studies, including more than 2500 European patients, confirm that primary Sjögren's syndrome is, undeniably, a systemic autoimmune disease.
Systemic involvement plays a key role in the prognosis of primary Sjögren's syndrome. Ioannidis et al.[16] were the first to propose a prognostic classification of primary Sjögren's syndrome, dividing patients into two groups according to the presence or absence of risk factors, with severe parotid involvement, vasculitis, hypocomplementemia and cryoglobulins being the main factors reported in prospective studies.[1] Baldini et al.[15] recently identified hypergammaglobulinemia, RF, hypocomplementemia and cryoglobulinemia as prognostic factors. A practical message for clinical practice is that patients with this clinical or immunological 'high risk' pattern should receive a closer followup and, probably, earlier and more robust therapeutic management.
Quote from: Judie P on March 25, 2016, 12:54:13 PM
I would prefer to think positive and hope that my SS-A positive primary Sjogren's will never develop into MS. Though I know that many who have MS can develop SJS more readily. It is a relief to me that Sjogrens can mimic MS, including muscle tremors and numbness. It reduces my stress and anxiety by quite a bit.
Sjögren's and MS are totally different illnesses, albeit they do have some or even many common symptoms. But Sjögren's never "develops into MS". You can have both but it's not really that common. Also, MS usually starts at young age, it's kind of rare to get a MS diagnosis at older age. From Finnish neuro organisation site: "Dx is usually given at about 20–40 years. Getting MS before 16 or over 60 years is rare."
My risk for MS is 25 times higher compared to "normal" people, because my sister has MS. However, I like to think that at 49 I'm past the risk because I'm too old for MS ;D
With the concurrent issues of possibly MS or possibly Sjogrens, you may never know for sure and you may have to wait til later on down the road when there are more blood tests available. We have had a couple of people on here in the past 10 years who were diagnosed with MS only to find out some years later that they had Sjogrens. The brain lesions can occur in both and hard to differentiate.
The vision issues can sometimes help determine which it is but this can be iffy also. I hope that they can keep you comfortable. I am also thinking that you probably do a lot of research on your own and this may help lead you to another doctor or another test that will prove to be beneficial. Good luck. Irish