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Neuro-Sjogren's and/or MS
I was dx with MS in 2004 (first symptom was vision loss in 2000- no lesions/second symptom vision blurriness 2 lesions - lumbar puncture confirmed 2 oligoclonal (sp?) bands).
This week I was newly dx with Neuro-Sjogrens. Bloodwork, Schirmer's and lip biopsy all showed positive.
Dr. says I prob. never had MS but more likely it was always Sjogren's.
Does Sjogren's present with the vision loss as a primary symptom? Could it be that I have both MS and Sjogren's or does having Sjogren's rule out my having MS?
The rheum. dr. wants me to start on 3 meds for sjogrens - I'm not sure what to do. Any thoughts would be appreciated. I just found this website tonight and am still searching for info. on neuro-sjogrens and treatment options for that. I never did opt to take any treatments for the MS because of all the side effects so I am curious about any side effects for sjogren's treatments. (sorry this post is so long...) I have more questions than answers.
This week I was newly dx with Neuro-Sjogrens. Bloodwork, Schirmer's and lip biopsy all showed positive.
Dr. says I prob. never had MS but more likely it was always Sjogren's.
Does Sjogren's present with the vision loss as a primary symptom? Could it be that I have both MS and Sjogren's or does having Sjogren's rule out my having MS?
The rheum. dr. wants me to start on 3 meds for sjogrens - I'm not sure what to do. Any thoughts would be appreciated. I just found this website tonight and am still searching for info. on neuro-sjogrens and treatment options for that. I never did opt to take any treatments for the MS because of all the side effects so I am curious about any side effects for sjogren's treatments. (sorry this post is so long...) I have more questions than answers.
Oh..I forgot to add that Plaquenil & steroids can cause adverse eye symptoms. You need to see an opthamologist on a regular basis if you are taking Plaquenil..at least this was told to my mother.
Take Care
Take Care
Hi Sandy,
Hopefully I can put all my thoughts into words right now..I'm a little scattered brained LOL.
I'm not an expert on Sjogren's, but I've done plenty of research on this autoimmune disease and my mother is also diagnosed with it. She was diagnosed back in the early 90's, but was recently put on the same meds that you spoke of, due to her worsening symptoms (Plaquenil, prednisone).
Sjogren's, from what I understand and read, can be almost a perfect MS mimicker. It can cause ON (optical neuritis) which is more common in MS. It can put lesions in the brain & spine just like MS. It can show O bands on an LP...so you can see how difficult it would be to distinguish between these two diseases unless you started to show the hallmark symptoms of one.
Sjogren's hallmark symptoms are..dry eyes, dry mouth, swollen salivary glands..but it can also include dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma and some are at a higher risk for thyroid disorders.
I understand your hesitation..being told you have MS, and now you have a diagnosis of Sjogren's. Confusing I would say..but my mother was diagnosed the same way you were..Through a lip biopsy. It's pretty much the guaranteed way of finding out if you have it or not. Some people, like my mother, don't come up positive on the blood test.
Since starting on the Plaquenil, she feels much better. She didn't have any side effects from this med. Her doctor uses the prednisone sparingly because, with Sjogren's, sometimes you have alot of stomach issues (which my mother has). They have to watch using this med because it can activate stomach problems and thin your bones if used for a long period of time. I think that was the main issue she had with this med. As far as Cel Cept..she doesn't take that. Do you know what that is for?
Sjogren's can be overwhelming..but can be a controlled autoimmune disease. If you have any questions that I didn't answer, please feel free to contact me. Sjogren's is also on the list for disease for SSDI.
Hopefully I can put all my thoughts into words right now..I'm a little scattered brained LOL.
I'm not an expert on Sjogren's, but I've done plenty of research on this autoimmune disease and my mother is also diagnosed with it. She was diagnosed back in the early 90's, but was recently put on the same meds that you spoke of, due to her worsening symptoms (Plaquenil, prednisone).
Sjogren's, from what I understand and read, can be almost a perfect MS mimicker. It can cause ON (optical neuritis) which is more common in MS. It can put lesions in the brain & spine just like MS. It can show O bands on an LP...so you can see how difficult it would be to distinguish between these two diseases unless you started to show the hallmark symptoms of one.
Sjogren's hallmark symptoms are..dry eyes, dry mouth, swollen salivary glands..but it can also include dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma and some are at a higher risk for thyroid disorders.
I understand your hesitation..being told you have MS, and now you have a diagnosis of Sjogren's. Confusing I would say..but my mother was diagnosed the same way you were..Through a lip biopsy. It's pretty much the guaranteed way of finding out if you have it or not. Some people, like my mother, don't come up positive on the blood test.
Since starting on the Plaquenil, she feels much better. She didn't have any side effects from this med. Her doctor uses the prednisone sparingly because, with Sjogren's, sometimes you have alot of stomach issues (which my mother has). They have to watch using this med because it can activate stomach problems and thin your bones if used for a long period of time. I think that was the main issue she had with this med. As far as Cel Cept..she doesn't take that. Do you know what that is for?
Sjogren's can be overwhelming..but can be a controlled autoimmune disease. If you have any questions that I didn't answer, please feel free to contact me. Sjogren's is also on the list for disease for SSDI.
Hi Shell,
Thanks for your reply. I haven't really had too many symptoms (consistently). As I said before, my first episode was in 2000 and I had complete loss of vision in left eye. There was no pain and MRI did not show any lesions. I took some motrin and vision came back on it's own in about a week. The second time was in 2004 and I experienced blurry vision in my right eye. MRI showed 2 lesions on brain, subsequent bloodwork and spinal showed 2 markers for MS. Very aggressive (treatment wise) neuro-psych dr. wanted me to start MS shots right away. Because my vision came back and I wasn't having other symptoms, I chose not to take the shots (or any other treatments) because of the side effects. I have been fine until 2009 when I experienced numbness/tingling down my right leg and also a numbness on the left side of my waist (from belly button around to my spine). The dr. said my leg numbness was due to sciatica and I went for PT which cleared that up. They did a thorasic mri which showed 1 lesion on my spine. no treatments, but the numbness finally went away in my waist area after about a year. I do get tired more easily but I am getting older and my kids and our lifestyle keeps us busy so, I don't really know if I should attribute that to MS or Sjogrens. ?? Anyway, because of some bloodwork, I then had to have a liver biopsy and a lip biopsy. liver biopsy was generally ok, the lip biopsy showed positive for sjogrens. Now this new dr. (rheum.) wants me to start taking meds for sjogrens (plaquenil, cel cept and prednisone). I am trying to find out more info. about these 3 drugs and possible side effects. I am not very good with taking meds (consistently) and I really don't like how many meds (including over the counter type stuff) makes me feel. I have to let the dr. know in the next 2 weeks if I plan to start any treatments for sjogrens. I am a little scared because of all the things that the dr. said sjogrens can cause. I'm just a little overwhelmed.
Thanks so much,
Sandy
Thanks for your reply. I haven't really had too many symptoms (consistently). As I said before, my first episode was in 2000 and I had complete loss of vision in left eye. There was no pain and MRI did not show any lesions. I took some motrin and vision came back on it's own in about a week. The second time was in 2004 and I experienced blurry vision in my right eye. MRI showed 2 lesions on brain, subsequent bloodwork and spinal showed 2 markers for MS. Very aggressive (treatment wise) neuro-psych dr. wanted me to start MS shots right away. Because my vision came back and I wasn't having other symptoms, I chose not to take the shots (or any other treatments) because of the side effects. I have been fine until 2009 when I experienced numbness/tingling down my right leg and also a numbness on the left side of my waist (from belly button around to my spine). The dr. said my leg numbness was due to sciatica and I went for PT which cleared that up. They did a thorasic mri which showed 1 lesion on my spine. no treatments, but the numbness finally went away in my waist area after about a year. I do get tired more easily but I am getting older and my kids and our lifestyle keeps us busy so, I don't really know if I should attribute that to MS or Sjogrens. ?? Anyway, because of some bloodwork, I then had to have a liver biopsy and a lip biopsy. liver biopsy was generally ok, the lip biopsy showed positive for sjogrens. Now this new dr. (rheum.) wants me to start taking meds for sjogrens (plaquenil, cel cept and prednisone). I am trying to find out more info. about these 3 drugs and possible side effects. I am not very good with taking meds (consistently) and I really don't like how many meds (including over the counter type stuff) makes me feel. I have to let the dr. know in the next 2 weeks if I plan to start any treatments for sjogrens. I am a little scared because of all the things that the dr. said sjogrens can cause. I'm just a little overwhelmed.
Thanks so much,
Sandy
Hi there,
Don't be sorry - your post is definitely not long. Thank you so much for joining us.
I have certainly thought of this scenario - that somewhere down the line of my life there will be that uncovered fact that points directly to something other than MS and here I've been treating it as if it is MS for years.
I think this is the very reason MS specialists give 99% diagnoses - just by chance another cause is discovered in your future.
I'm not an expert in Sjogens, just know some of the reasons it can mimic MS - one being the lesions and I do believe you can have ON as well (how typical that is, I'm just not versed and would have to research).
This link has been provided in the past as a solid source of info on SS:
http://professionals.epilepsy.com/page/inflammatory_sjorgren.html
As away. We'll all provide input where we can. Would you mind me asking what you've been experiencing over the years? And, how you are feeling?
Welcome - welcome,
-Shell
Don't be sorry - your post is definitely not long. Thank you so much for joining us.
I have certainly thought of this scenario - that somewhere down the line of my life there will be that uncovered fact that points directly to something other than MS and here I've been treating it as if it is MS for years.
I think this is the very reason MS specialists give 99% diagnoses - just by chance another cause is discovered in your future.
I'm not an expert in Sjogens, just know some of the reasons it can mimic MS - one being the lesions and I do believe you can have ON as well (how typical that is, I'm just not versed and would have to research).
This link has been provided in the past as a solid source of info on SS:
http://professionals.epilepsy.com/page/inflammatory_sjorgren.html
As away. We'll all provide input where we can. Would you mind me asking what you've been experiencing over the years? And, how you are feeling?
Welcome - welcome,
-Shell
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