Aa
Diagnoses for me at last?
Hi all, long time I since I have been here. Sorry for my English in advance.
I have had all kinds of strange neurological symptoms for more than five years now, and when I got an MRI done in 2014 that had about 40 lesions mostly in the periventricular area, also few black holes, but got no clear answer from my neuro, I gave up. I tried to not think to much about this, and just live my life. But in January 2015 I read an article about an lady from my country that is working in UK on a research on MS lesions, so I sent her an e-mail and asked if it was ok to send her my MRI and if she would tell me what she thought. So then I did, and she showed her colleagues also, they all agreed that it looked a lot like MS but not enough, so I should go see a specialist in London that is highly recommended for difficult cases.
But I was not going to London, I was planing a trip to NY in the fall. So when I saw info about a respected MS center in NY, I sent them an e-mail and then picked a young neuro of their list and he then e-mailed me and told me to send some MRI samples, witch I did. He said he thought he could help and told me to come (it was a week later). So I brought all my medical records with me, and in the end he said, he would like to check if I have Sjögrens. He saw that I drank a lot of water while I was there, and that gave him a glue and also that I had ANA in low +.
He sent me some recommendations about what I needed to do when I came home, and I gave that to my gp. Now I was getting the results from my last test, minor lip biopsy, and it was positive. So now he says that he just has to get the confirmed results from my ENT, eyedoctor and gp, and then he will send them a confirmation about this and the neurological part. There is not much (or anything) known about CNS Sjögrens in my country and it seems like they are still just discovering how much like MS it can be.
So I just want to let you all know, because we have always wanted to hear more about what happens to our limbolanders. So when you are in limbo ask your neuro to check for Sjögrens, it could lead you in the right direction :) Here is a good link to explanation about it, and notice that people with the neurological version of Sjögrens usually start with just that and do not imagine that there is a dryness. It is: slideshare.net/DMG33/sjogren-syndrome-a-complex-cns-disease remember to put the www in front :)
I have had all kinds of strange neurological symptoms for more than five years now, and when I got an MRI done in 2014 that had about 40 lesions mostly in the periventricular area, also few black holes, but got no clear answer from my neuro, I gave up. I tried to not think to much about this, and just live my life. But in January 2015 I read an article about an lady from my country that is working in UK on a research on MS lesions, so I sent her an e-mail and asked if it was ok to send her my MRI and if she would tell me what she thought. So then I did, and she showed her colleagues also, they all agreed that it looked a lot like MS but not enough, so I should go see a specialist in London that is highly recommended for difficult cases.
But I was not going to London, I was planing a trip to NY in the fall. So when I saw info about a respected MS center in NY, I sent them an e-mail and then picked a young neuro of their list and he then e-mailed me and told me to send some MRI samples, witch I did. He said he thought he could help and told me to come (it was a week later). So I brought all my medical records with me, and in the end he said, he would like to check if I have Sjögrens. He saw that I drank a lot of water while I was there, and that gave him a glue and also that I had ANA in low +.
He sent me some recommendations about what I needed to do when I came home, and I gave that to my gp. Now I was getting the results from my last test, minor lip biopsy, and it was positive. So now he says that he just has to get the confirmed results from my ENT, eyedoctor and gp, and then he will send them a confirmation about this and the neurological part. There is not much (or anything) known about CNS Sjögrens in my country and it seems like they are still just discovering how much like MS it can be.
So I just want to let you all know, because we have always wanted to hear more about what happens to our limbolanders. So when you are in limbo ask your neuro to check for Sjögrens, it could lead you in the right direction :) Here is a good link to explanation about it, and notice that people with the neurological version of Sjögrens usually start with just that and do not imagine that there is a dryness. It is: slideshare.net/DMG33/sjogren-syndrome-a-complex-cns-disease remember to put the www in front :)
Thank you so much Alex. Yeah I think that in my mind I will not exclude MS until things get more clear (could take years). But I hope my neuro and other doctors in Iceland will accept this, and be more "interested" in my case now that they have heard what my NY neuro said (wrote to them). It would beat being in limbo any day, at least I have the attention that I needed so much from my doctors :) Thank you for being here :)
My best,
Dagun
My best,
Dagun
Hi Ren,
Nice to "see" you again :) yeah it has been a while now, I was trying to be busy not thinking to much about all of this. Thank you for your post with all this info, this is the best place to be when I want to get opinion on things and compare diagnosing stories.
I feel it is so interesting that you have also been "suspected" to have Sjogren's, then we are at least 4 and probably many more, that "dance" between Sjogren´s and MS :)
My neuro says I do not have MS, but he is sure I do have Sjogren´s even though I don´t meet the whole criteria (yet). He was now sending me the letter for my doctors here in Iceland, and there he talks about everything that point too Sjogren´s I have slightly abnormal VEP (right eye 118), trigeminal neuropathy (numb half of face), slightly positive ANA and ENA, about 40 lesions and also black holes, dry mouth (positive lip biobsy), slightly dry right eye (Schirmer test), no oligoclonal bands, negative EMG, B12 slightly low (279).
When they say straight out "it does not look like MS" do they ever change their mind?
I looked at the webpage you mention and it had good info. I noticed specially this "Motor involvement of the fifth nerve (affecting chewing and jaw movements) is uncommon" because I have often told my neuro that there is something strange going on in my mouth and neck, feeling like my coordination is lacking, muscles not working right. I sometimes with out being eating or drinking, bite the jaws together suddenly (and sometimes my tongue or inside of mouth gets in between). So this is strange to see this mentioned.
Thank you so much for your input! To learn this about some of you about Sjogren´s, is very interesting and I hope you all don´t mind that I hang around here even though I have this diagnoses (almost). This all sounds too alike, and it is like doctors are still not quite sure about this all.
Best wishes to you Ren,
Dagun
Nice to "see" you again :) yeah it has been a while now, I was trying to be busy not thinking to much about all of this. Thank you for your post with all this info, this is the best place to be when I want to get opinion on things and compare diagnosing stories.
I feel it is so interesting that you have also been "suspected" to have Sjogren's, then we are at least 4 and probably many more, that "dance" between Sjogren´s and MS :)
My neuro says I do not have MS, but he is sure I do have Sjogren´s even though I don´t meet the whole criteria (yet). He was now sending me the letter for my doctors here in Iceland, and there he talks about everything that point too Sjogren´s I have slightly abnormal VEP (right eye 118), trigeminal neuropathy (numb half of face), slightly positive ANA and ENA, about 40 lesions and also black holes, dry mouth (positive lip biobsy), slightly dry right eye (Schirmer test), no oligoclonal bands, negative EMG, B12 slightly low (279).
When they say straight out "it does not look like MS" do they ever change their mind?
I looked at the webpage you mention and it had good info. I noticed specially this "Motor involvement of the fifth nerve (affecting chewing and jaw movements) is uncommon" because I have often told my neuro that there is something strange going on in my mouth and neck, feeling like my coordination is lacking, muscles not working right. I sometimes with out being eating or drinking, bite the jaws together suddenly (and sometimes my tongue or inside of mouth gets in between). So this is strange to see this mentioned.
Thank you so much for your input! To learn this about some of you about Sjogren´s, is very interesting and I hope you all don´t mind that I hang around here even though I have this diagnoses (almost). This all sounds too alike, and it is like doctors are still not quite sure about this all.
Best wishes to you Ren,
Dagun
1 Comments
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Hi!
It's been a long time since you and I last posted with each other.
I saw this post on your positive Sjogren's lip biopsy and wanted to comment on it and other things.
First, the lip biopsy is considered to be the "gold standard" or best test to diagnose Sjogren's. I would know this because I , too, was diagnosed with Sjogren's many years ago. Even though I had negative blood work, I had many of the symptoms.
My MRI had oval, not round lesions and my lumbar puncture was esstenially negative with zero O-bands. So, I was treated for Sjogren's. However, as the years wore on my symptoms worsened though my MRI was basically unchanged.
When I finally made my way to an MS specialist, he excluded every other possible mimic, including Sjogren's syndrome. My lip biopsy was negative leaving only MS as a possible diagnosis.
Fast forward 3 years and my MRI finally developed a corpus callosum lesion that clinched the MS diagnosis, even though I had been on treatment for a year by then. I do have sicca syndrome and it is what mimicked Sjogren's.
All this history to prove that the doctors aren't always right. Yes, you do have Sjogren's but perhaps you have MS as well. Especially with black holes on your MRI.
I did a QUICK, and certainly not completely thorough, search on the internet for black holes and Sjogren's syndrome and could only find images for black holes and MS. According to multiple sites, black holes demonstrate irreversible demyleination such as that which occurs with MS.
I did find several good Sjogren's resources. One you probably already found, Sjogrens Society Foundation. It does not mention CNS involvement with Sjogrens. Another excellent source I found did. It can be found at :
http://www.sjogrensworld.org/mandel.htm
This second site does talk about how the Central Nervous System is affected by Sjogren's. I'm not sure of all of your symptoms and what tests you have undergone so you can read this and decide if you need further testing to make sure that you have only one autoimmune disorder. A great many people with autoimmune disorders do indeed have more than one.
I do hope you only have Sjogren's but I also would not want you to have MS and not be treated for it.
Wishing you the best,
Rendean
It's been a long time since you and I last posted with each other.
I saw this post on your positive Sjogren's lip biopsy and wanted to comment on it and other things.
First, the lip biopsy is considered to be the "gold standard" or best test to diagnose Sjogren's. I would know this because I , too, was diagnosed with Sjogren's many years ago. Even though I had negative blood work, I had many of the symptoms.
My MRI had oval, not round lesions and my lumbar puncture was esstenially negative with zero O-bands. So, I was treated for Sjogren's. However, as the years wore on my symptoms worsened though my MRI was basically unchanged.
When I finally made my way to an MS specialist, he excluded every other possible mimic, including Sjogren's syndrome. My lip biopsy was negative leaving only MS as a possible diagnosis.
Fast forward 3 years and my MRI finally developed a corpus callosum lesion that clinched the MS diagnosis, even though I had been on treatment for a year by then. I do have sicca syndrome and it is what mimicked Sjogren's.
All this history to prove that the doctors aren't always right. Yes, you do have Sjogren's but perhaps you have MS as well. Especially with black holes on your MRI.
I did a QUICK, and certainly not completely thorough, search on the internet for black holes and Sjogren's syndrome and could only find images for black holes and MS. According to multiple sites, black holes demonstrate irreversible demyleination such as that which occurs with MS.
I did find several good Sjogren's resources. One you probably already found, Sjogrens Society Foundation. It does not mention CNS involvement with Sjogrens. Another excellent source I found did. It can be found at :
http://www.sjogrensworld.org/mandel.htm
This second site does talk about how the Central Nervous System is affected by Sjogren's. I'm not sure of all of your symptoms and what tests you have undergone so you can read this and decide if you need further testing to make sure that you have only one autoimmune disorder. A great many people with autoimmune disorders do indeed have more than one.
I do hope you only have Sjogren's but I also would not want you to have MS and not be treated for it.
Wishing you the best,
Rendean
1 Comments
I would not totally exclude MS either. That is a lot of lesions and people can have both.
Hi Alex and Shell,
Nice to hear from you both :) it is quite strange how they can decide about those lesions. The doctor´s that work with the MRI (radiologists?) they had said my lesions were T2 hyperintense bright nonspecific lesions in the periventricular area, too many to be normal for my age, or about 40 in size up to 6mm. I nearly think of it as "rude" to call the damaged spots in my brain, that are giving my all kinds of strange symptoms, nonspecific! Like it´s nothing. And then now finally it is recognized what they might be doing to me, just because they found a syndrome that it can fit to. What if, they had seen one lesion in the corpus callosum, would it then be MS?
This is all a bit complicated, but I´m just happy if the NY neuro will be able to "sell the idea" of Sjogrens to my doctors in Iceland. I really hope that goes well, but he said he would write a letter to them, my neuro, ENT, eyedoctor and gp, and explain his findings and I hope he will do that well. I think that doctors here might not know anything really about CNS Sjogrens, we are a small country of 320,000,- people, so I think this might be new to them.
I´m just hoping for the best, and waiting to hear again from my NY neuro and see the letter he writes.
Thank you so much for your support,
My best,
Dagun
Nice to hear from you both :) it is quite strange how they can decide about those lesions. The doctor´s that work with the MRI (radiologists?) they had said my lesions were T2 hyperintense bright nonspecific lesions in the periventricular area, too many to be normal for my age, or about 40 in size up to 6mm. I nearly think of it as "rude" to call the damaged spots in my brain, that are giving my all kinds of strange symptoms, nonspecific! Like it´s nothing. And then now finally it is recognized what they might be doing to me, just because they found a syndrome that it can fit to. What if, they had seen one lesion in the corpus callosum, would it then be MS?
This is all a bit complicated, but I´m just happy if the NY neuro will be able to "sell the idea" of Sjogrens to my doctors in Iceland. I really hope that goes well, but he said he would write a letter to them, my neuro, ENT, eyedoctor and gp, and explain his findings and I hope he will do that well. I think that doctors here might not know anything really about CNS Sjogrens, we are a small country of 320,000,- people, so I think this might be new to them.
I´m just hoping for the best, and waiting to hear again from my NY neuro and see the letter he writes.
Thank you so much for your support,
My best,
Dagun
Hi Dagun!
As always your English is excellent, and we understand you loud and clear. Wow - A diagnosis for you after all of these years! Have you had an opportunity to research any doctors who are treating Sjogens? Or did the NY Doc have any international suggestions?
I too like mentioned would like to know more about the lesions and Sjogens, but it is a great mimic, and I'm assuming this is partly why. I have not read up on mimics in quite some time, but I will to see those exact cross overs. What we know for certain is it's a mimic so that says a lot. (((Hugs))) Chat soon -shell
As always your English is excellent, and we understand you loud and clear. Wow - A diagnosis for you after all of these years! Have you had an opportunity to research any doctors who are treating Sjogens? Or did the NY Doc have any international suggestions?
I too like mentioned would like to know more about the lesions and Sjogens, but it is a great mimic, and I'm assuming this is partly why. I have not read up on mimics in quite some time, but I will to see those exact cross overs. What we know for certain is it's a mimic so that says a lot. (((Hugs))) Chat soon -shell
Dagun,
Good to hear from you. I am glad you are getting somewhere. I do not understand why you were in Limbo with so many lesions.
Alex
Good to hear from you. I am glad you are getting somewhere. I do not understand why you were in Limbo with so many lesions.
Alex
Hi Sailor..
That is so interesting to hear. It would be great to hear from if there are even more people here that has both MS and Sjogrens. It seems as there are still a argument about witch is from witch, and in the end who really knows, it could be that they end up saying that Sjogrens is one more "type" of MS. I mean they are still arguing if MS is a autoimmune disease, but if it is then we should have positive ANA anyway. The specialists are not all on the "same page" about this. If you read the link I gave up, there they talk about spinal lesions in Sjogrens. So I guess there is a lot they are still figuring out about all of this. Thank you for your thoughts Sailor :)
My best wishes,
Dagun
That is so interesting to hear. It would be great to hear from if there are even more people here that has both MS and Sjogrens. It seems as there are still a argument about witch is from witch, and in the end who really knows, it could be that they end up saying that Sjogrens is one more "type" of MS. I mean they are still arguing if MS is a autoimmune disease, but if it is then we should have positive ANA anyway. The specialists are not all on the "same page" about this. If you read the link I gave up, there they talk about spinal lesions in Sjogrens. So I guess there is a lot they are still figuring out about all of this. Thank you for your thoughts Sailor :)
My best wishes,
Dagun
Hi Corrie, thank you so much! It is nice to be back here, I hope it can also help other limbolanders in search for answers, because this is a "great" mimic of MS.
Thank you and my best wishes,
Dagun
Thank you and my best wishes,
Dagun
Hi there, good to see you again around here and I am glad that there seems to be progress with a diagnosis!
I had no idea Sjogren's had neuro symptoms so good for you for hanging in there to get help in a most unexpected way.
Congratulations and please keep us posted,
Corrie
I had no idea Sjogren's had neuro symptoms so good for you for hanging in there to get help in a most unexpected way.
Congratulations and please keep us posted,
Corrie
Oh at first this post did not come, so I thought I had lost it :/ well now you have it twice! :)
I was looking over the criteria again and we have to have positive ANA or positive lip biopsy along with the feeling of dryness in eyes and mouth.
My MS neuro said many people that have that type of Sjögrens (CNS) just start with the neurological problems and maybe lesions, but do not feel dryness or meet the criteria for many years. And even though they feel the dryness it can take time to show on the tests.
This is all so strange, and thank you for telling me Ess about your checkup. I would be curios to hear if there are more of us that have been checked for this. I also have had issues with my autonomic system, but I guess my dryness is not because of that, now that I have positive test..
There seems to be lot that they still don´t know about this and the difference to MS. Maybe one day this will be connected to MS, who knows.
Best wishes to you Ess,
Dagun
My MS neuro said many people that have that type of Sjögrens (CNS) just start with the neurological problems and maybe lesions, but do not feel dryness or meet the criteria for many years. And even though they feel the dryness it can take time to show on the tests.
This is all so strange, and thank you for telling me Ess about your checkup. I would be curios to hear if there are more of us that have been checked for this. I also have had issues with my autonomic system, but I guess my dryness is not because of that, now that I have positive test..
There seems to be lot that they still don´t know about this and the difference to MS. Maybe one day this will be connected to MS, who knows.
Best wishes to you Ess,
Dagun
Ess, I was going over the criteria, it says that you would need to have at least positive lip biopsy (or ANA) along with the dryness that you feel in your eyes and mouth. He told me that it seems like most often people who have this in the CNS they do not feel the dryness until much later, AND it takes even longer time for the tests to show up positive. The diagnoses taking many years.
This is all really strange, because how similar this is, I mean could this be called a "type" of MS in few years? They are still "arguing" about parts of this. Sorry in need of the right English words here ;)
But it is so interesting to hear that you were checked for this Ess, and I would be curious to know if anyone else here has been checked for it?
Best wishes to you,
Dagun
This is all really strange, because how similar this is, I mean could this be called a "type" of MS in few years? They are still "arguing" about parts of this. Sorry in need of the right English words here ;)
But it is so interesting to hear that you were checked for this Ess, and I would be curious to know if anyone else here has been checked for it?
Best wishes to you,
Dagun
Hi Ess,
Even though your post is good and with lot of info, I don´t know how I pushed the "best answer" button ;)
But yeah, that is the lip biopsy test that was positive for me and he said "that's it now this is clear, you have Sjögrens" and I have a low score on ANA test. Low score on Schirmer eye test. And yes of course I am probably always going to think, could I have MS also. When I read all the new articles about this, many are not convinced how to be sure if we have Sjögrens with CNS lesions or if we have MS. So I guess there is lot still to learn about this.
They say the neurological part of Sjögrens is quite similar to MS, so if we have ANA or positive lip biopsy then Sjögrens is probably the answer. Also the lesions are supposed to be more round not oval, and often more of them. I do not have Dawson fingers so that is also a part of it.
This is also a article I was reading: omicsgroup.org/journals/gougerot-sjgren-syndrome-mimicking-multiple-sclerosis-2167-7921-1000175.pdf
Even though your post is good and with lot of info, I don´t know how I pushed the "best answer" button ;)
But yeah, that is the lip biopsy test that was positive for me and he said "that's it now this is clear, you have Sjögrens" and I have a low score on ANA test. Low score on Schirmer eye test. And yes of course I am probably always going to think, could I have MS also. When I read all the new articles about this, many are not convinced how to be sure if we have Sjögrens with CNS lesions or if we have MS. So I guess there is lot still to learn about this.
They say the neurological part of Sjögrens is quite similar to MS, so if we have ANA or positive lip biopsy then Sjögrens is probably the answer. Also the lesions are supposed to be more round not oval, and often more of them. I do not have Dawson fingers so that is also a part of it.
This is also a article I was reading: omicsgroup.org/journals/gougerot-sjgren-syndrome-mimicking-multiple-sclerosis-2167-7921-1000175.pdf
1 Comments
Dagan,
I would not discount the MS symptoms as being from Sjogrens as I have both MS and Sjogrens. My MS symptoms developed a number of years before the Sjogrens did. Also evidently Sjogrens does not cause spinal lesions, which is what clinched my MS diagnoses.
I would not discount the MS symptoms as being from Sjogrens as I have both MS and Sjogrens. My MS symptoms developed a number of years before the Sjogrens did. Also evidently Sjogrens does not cause spinal lesions, which is what clinched my MS diagnoses.
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To be diagnosed with Sjogrens a person must have sicca symptoms including dry mouth and eyes. Then at least one of two criteria must be true--either markers in the blood (ANA, etc.) or positive biopsy of saliva gland(s) in lower lip. Many people have both of these.
The reason I'm familiar with all this is that about 2 years ago I developed extreme dryness in my eyes, nose and mouth. I ultimately went to the (US) National Institutes of Health at their center for Sjogrens and similar illnesses. The specialist dentist there did a huge amount of testing and said my mouth was very dry (big surprise). I was tested by their rheumatologist through physical exam only and was told I didn't show any rheumatological symptoms, which also was not surprising since I had no such complaints.
I underwent a lip biopsy there as well. When the results came back they were not positive for Sjogrens. My neuro didn't believe all this, even though it was done at NIH, which is very prestigious, and insisted I be re-tested at Hopkins, where he works, also very prestigious. Different kind of testing, dry eyes and mouth, but once again I didn't meet the criteria. So finally it was decided that the symptoms come from a malfunctioning autonomic nervous system due to MS. I do have other autonomic problems as well. Meanwhile my primary doc still is fairly sure I have Sjogrens.
Anyway, I had MS, definite, for a lot of years before the other symptoms set in. It's very possible, though, to have both MS and Sjogrens (and maybe I do). Both are autoimmune, and I also have autoimmune thyroid disease. So are you sure you don't have MS and Sjogrens too?
I'm also wondering what tests were used to diagnose you. Sjogrens doesn't need lesions or even a brain MRI, and you say you have many brain lesions. Did they explain what neurological Sjogrens actually is? I would be grateful for an explanation.
Thanks and good wishes,
ess