Aa
MS or CNS Sjogrens?
I am a 58 year old male who, after one year of progressive optic neuritis, doctors are still reluctant to give a firm diagnosis. My neurologist (not an MS specialist) has conducted all of the following test and believes I have definite MS. He referred me to an MS Specialist for a second opinion, who after reviewing the same, says I do not have MS but instead might have “Sero-negitive CNS Sjogren’s Syndrome, but admitted he was not a Sjogren’s specialist. After looking at the MRI films, he said, “I couldn’t in my wildest imagination believe those spots are MS lesions.
I know you cannot make a diagnosis here, but in your opinion would the following be consistent with definite MS, possible MS, probable MS, Clinically Isolated Syndrome, or is it more likely I have something other than MS ?
Test results thus far:
Optic neuritis with visual loss confirmed by CT, MRI (enhancing lesion on the optic nerve pathway), visual evoked potential abnormal with abnormal visual acuity and visual fields test also.
Abnormal spinal fluid with multiple oligoclonal bands, scattered somewhat activated lymphoid cells and rare macrophages (no lymphocytes but neutrophils and monocytes present), high CSF albumin, high serum albumin, and high CFS protein. Ig index is normal.
Prior history of neurologic symptoms include facial nerve paresis, lower jaw numbness and numbness on back adjacent to the spinal column. Several episodes over the past 15 years of lower leg swelling that lasted about a week. So severe that I cannot get out of bed without help. Very painful.
Abnormal EEG. Prolonged somatosensory evoked potentials with numbness in both feet consistent with spinal cord involvement. However no spinal lesions identified on recent MRI.
Nerve conduction velocity (NCV) tests indicates no peripheral neuropathy.
Polyarthralias and sicca syndrome, but with only a single focus (inflammatory cells) lip biopsy for Sjogrens Syndrome. Negitive serology marker for Sjogrens.
On Brain MRI – Per radiologist “Several small foci of increased T2 and FLAIR signal intensity within the periventricular white matter more so in the periatrial white matter than elsewhere. Study is not specific for demyelinating disease but a demyelinating disease process could conceivably have such imaging characteristics in some circumstances”.
Treatments thus far:
Optic neuritis treated with high dose Solu-Medrol by IV – no improvement.
Trial of IVIG indicates some improvement in the visual field. Monthly IVIG continuing at this time.
Thank you for any help you may provide,
Danny
I know you cannot make a diagnosis here, but in your opinion would the following be consistent with definite MS, possible MS, probable MS, Clinically Isolated Syndrome, or is it more likely I have something other than MS ?
Test results thus far:
Optic neuritis with visual loss confirmed by CT, MRI (enhancing lesion on the optic nerve pathway), visual evoked potential abnormal with abnormal visual acuity and visual fields test also.
Abnormal spinal fluid with multiple oligoclonal bands, scattered somewhat activated lymphoid cells and rare macrophages (no lymphocytes but neutrophils and monocytes present), high CSF albumin, high serum albumin, and high CFS protein. Ig index is normal.
Prior history of neurologic symptoms include facial nerve paresis, lower jaw numbness and numbness on back adjacent to the spinal column. Several episodes over the past 15 years of lower leg swelling that lasted about a week. So severe that I cannot get out of bed without help. Very painful.
Abnormal EEG. Prolonged somatosensory evoked potentials with numbness in both feet consistent with spinal cord involvement. However no spinal lesions identified on recent MRI.
Nerve conduction velocity (NCV) tests indicates no peripheral neuropathy.
Polyarthralias and sicca syndrome, but with only a single focus (inflammatory cells) lip biopsy for Sjogrens Syndrome. Negitive serology marker for Sjogrens.
On Brain MRI – Per radiologist “Several small foci of increased T2 and FLAIR signal intensity within the periventricular white matter more so in the periatrial white matter than elsewhere. Study is not specific for demyelinating disease but a demyelinating disease process could conceivably have such imaging characteristics in some circumstances”.
Treatments thus far:
Optic neuritis treated with high dose Solu-Medrol by IV – no improvement.
Trial of IVIG indicates some improvement in the visual field. Monthly IVIG continuing at this time.
Thank you for any help you may provide,
Danny
Hi
I know it is extremely rare, but I have Sjogrens and Optic Nueritis. Have you had a lip biopsy? Mine was diagnosed at Mayo. Things never seem easy in the land of autoimmune disorders. Have you tried alpha lipoic acid? I was in a research study related to ON and alpha lipoic acid. It is an antioixidant that you can read up on...
I know it is extremely rare, but I have Sjogrens and Optic Nueritis. Have you had a lip biopsy? Mine was diagnosed at Mayo. Things never seem easy in the land of autoimmune disorders. Have you tried alpha lipoic acid? I was in a research study related to ON and alpha lipoic acid. It is an antioixidant that you can read up on...
I am a 42 yr. female diagnosed with primary sjogrens for over 11 years now. Currently on IV infusion therapy monthly as well as other "standard" maint ss meds. Recently had brain MRI for memory and facial paralysis. Found non specific white matter changes in peri ventricular region on both sides of brain. Several more focal 4-5 mm in several locations. CSF came back with very high Albumin IgG levels, multiple oligo. Bands high synth rate. Keep reading MS is questionable diagnosis for SS patients. Is that true? Don't see neuro for another week..
I really like the "older and wiser" reference. OK, really just the "wiser" part. Your MRI comment is a good one. However, I was not smart enough to realize some of the problems I have had over the years were likely MS related. Had I been, I may not have lost most of the sight in my right eye.
Danny
Danny
It just seems to me that as people live longer, the age span for disease emergence can be longer; particularly when one considers that MRIs were unavailable for diagnosis when our older and wiser population were in the quote "prime age brackets for developing MS". Also. the longer we live the greater chance we have of virally or environmentally, etcetera triggering the MS-causing component in out system.
Just a thought.
Another thought, I had read that people born in November were less like to develop MS. It seems like there are several of us here that are November babies. That also makes me wonder if the environmental influences are more predominant at cyclical times and/or also the concept that their influence may be more pronounced at certain developmental stages, etc. Any other thoughts?
Just a thought.
Another thought, I had read that people born in November were less like to develop MS. It seems like there are several of us here that are November babies. That also makes me wonder if the environmental influences are more predominant at cyclical times and/or also the concept that their influence may be more pronounced at certain developmental stages, etc. Any other thoughts?
Thank you again. We are all blessed to have you on this board. I'm going to send this to my Nero right away.
THanks so much
Danny
THanks so much
Danny
Here is the study from Spain:
"MADRID, SPAIN -- October 1, 2006 -- In a new study of patients diagnosed with multiple sclerosis (MS) after the age of 60, nearly half of relapsing patients with relapsing-remitting multiple sclerosis (RRMS) and patients with clinically isolated syndrome presented with signs of inflammation on magnetic resonance imaging (MRI).
This finding suggests that the disease course depends on the inflammatory component of MS and not just age, said researchers who presented the findings here on September 29th at the 22nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).
"We have found that persons over 60 can have active relapses, emergence of new lesions and signs of inflammation just like people in their 20's," said lead investigator Robert Bermel, MD, fellow, Cleveland Clinic, Cleveland, Ohio. "So these older patients are potentially candidates for treatment. But clinicians have been hesitant to make the diagnosis in older people."
...........................
""MS in older adults may be under-recognized and accurate diagnosis is often delayed by many years," the authors concluded in their abstract. "Some patients have symptom onset at more typical ages, but a sizable proportion have onset after age 60."
"Nearly half of relapsing patients (RRMS and CIS) presented with inflammation on MRI, which suggests that the disease course is dependent upon the inflammatory component of MS and not just age," they wrote.
"We now believe now that age should not bear upon diagnosis," Dr. Bermel added.
[Presentation title: Active Inflammation Is Common in Very Late Onset Multiple Sclerosis: Characteristics of 111 Patients. Abstract P575] "
Here is the link to these quotes:
http://www.docguide.com/news/content.nsf/news/852571020057CCF6852571FA00692EDE
Quix
"MADRID, SPAIN -- October 1, 2006 -- In a new study of patients diagnosed with multiple sclerosis (MS) after the age of 60, nearly half of relapsing patients with relapsing-remitting multiple sclerosis (RRMS) and patients with clinically isolated syndrome presented with signs of inflammation on magnetic resonance imaging (MRI).
This finding suggests that the disease course depends on the inflammatory component of MS and not just age, said researchers who presented the findings here on September 29th at the 22nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).
"We have found that persons over 60 can have active relapses, emergence of new lesions and signs of inflammation just like people in their 20's," said lead investigator Robert Bermel, MD, fellow, Cleveland Clinic, Cleveland, Ohio. "So these older patients are potentially candidates for treatment. But clinicians have been hesitant to make the diagnosis in older people."
...........................
""MS in older adults may be under-recognized and accurate diagnosis is often delayed by many years," the authors concluded in their abstract. "Some patients have symptom onset at more typical ages, but a sizable proportion have onset after age 60."
"Nearly half of relapsing patients (RRMS and CIS) presented with inflammation on MRI, which suggests that the disease course is dependent upon the inflammatory component of MS and not just age," they wrote.
"We now believe now that age should not bear upon diagnosis," Dr. Bermel added.
[Presentation title: Active Inflammation Is Common in Very Late Onset Multiple Sclerosis: Characteristics of 111 Patients. Abstract P575] "
Here is the link to these quotes:
http://www.docguide.com/news/content.nsf/news/852571020057CCF6852571FA00692EDE
Quix
Yes, it is unusual, but not impossible or unheard of. I think he is a coward. He doesn't have the **** it takes to put together the picture and say I have one of the older 1%. Sheeesh!
Lisa - Thanks so much for doing my legwork!! You're a doll!! I have extensive family commitments for the next three weeks and I'm trying to do about twice my normal amount of stuff and also find time every day for the forum.
Quix
Lisa - Thanks so much for doing my legwork!! You're a doll!! I have extensive family commitments for the next three weeks and I'm trying to do about twice my normal amount of stuff and also find time every day for the forum.
Quix
I hope you don't mind my butting in, but I Googled age range for MS diagnosis and found 2 good hits for diagnosis over the "old" range.
MS Journal:
http://msj.sagepub.com/cgi/content/abstract/13/6/763 - this references Dx up to age 70
The MS International Foundation article: scroll down to "quick facts"
www.msif.org/en/about_ms_/what_is_ms.html
Doctors Guide Channel:
www.docguide.com/news/content.nsf/news/85257CCF6852571FAE00692EDE
Hope this helps
Penn
MS Journal:
http://msj.sagepub.com/cgi/content/abstract/13/6/763 - this references Dx up to age 70
The MS International Foundation article: scroll down to "quick facts"
www.msif.org/en/about_ms_/what_is_ms.html
Doctors Guide Channel:
www.docguide.com/news/content.nsf/news/85257CCF6852571FAE00692EDE
Hope this helps
Penn
Dear Dr. Quix
Thank you so much for your answer to my original post. You and Heather have given me some hope that I will eventually get to the bottom of this. My biggest fear is that I may have MS, and am not being given any disease modifying drugs. I'll try to answer your questions following:
I don't know if Sjogren's can present with white matter lesions.
Sjogrens does not cause optic neuritis
You can have a single Oligoclonal Band in the CSF with Sjogren's but generally not multiple bands.
Dx MS at age 58 - the MS Specialist said that MS at my age would be unusual.
I have had several events over the past 15 years where one or both legs would swell to the extent
I could not get out of bed or walk without help - very painful.
Had an MRI of both cervical and thoracic spine and both were normal.
SEP - was abnormal
EEG - was abnormal
Prior Bells Palsy age 38
My Nero has done exams for sensory problems, results: slight carpal tunnel more in right than left,
significant numbness in both feet - more right than left, numbness in center of back near spine.
He also did peripheral nerve conduction test and found all was ok - no peripheral nerve problems
States that his exam indicates a conduction "blockage at the spine".
Thank you again
Danny
Ps if you can find the "older" MS infor I would appreciate it.
Thank you so much for your answer to my original post. You and Heather have given me some hope that I will eventually get to the bottom of this. My biggest fear is that I may have MS, and am not being given any disease modifying drugs. I'll try to answer your questions following:
I don't know if Sjogren's can present with white matter lesions.
Sjogrens does not cause optic neuritis
You can have a single Oligoclonal Band in the CSF with Sjogren's but generally not multiple bands.
Dx MS at age 58 - the MS Specialist said that MS at my age would be unusual.
I have had several events over the past 15 years where one or both legs would swell to the extent
I could not get out of bed or walk without help - very painful.
Had an MRI of both cervical and thoracic spine and both were normal.
SEP - was abnormal
EEG - was abnormal
Prior Bells Palsy age 38
My Nero has done exams for sensory problems, results: slight carpal tunnel more in right than left,
significant numbness in both feet - more right than left, numbness in center of back near spine.
He also did peripheral nerve conduction test and found all was ok - no peripheral nerve problems
States that his exam indicates a conduction "blockage at the spine".
Thank you again
Danny
Ps if you can find the "older" MS infor I would appreciate it.
Hi, I am so sorry to be so tardy in answering your questions. Heather jumped in with many of my own thoughts. I agree that your MRI and symptoms point strongly toward MS. I am not aware that Sjogrens can present with white matter lesions. I would have to do some reading on the topic, and I'm not up for research right at this moment. The sicca syndrome with polyarthralgia certainly suggests Sjogren's, but that does not rule out MS. As for hesitating to diagnose MS at your age.....what is the problem?
There have documented and confirmed diagnoses of MS as young as 18 months and as "old" as 72 years. I recently read an article from Spain (I think) profiling over 110 people who were diagnosed with MS after age 60. We have one on this forum, Siddy. I was diagnosed at age 55.
Have you had any discreet attacks of neurologic dysfunction other than the Optic Neuritis? Have you had MRI's of your spinal cord? That would be very important. I also would like to know if you have any abnormalities on your phsycial (neuro) exam other than loss of vision.
I can't see why you don't already carry a Definite MS diagnosis. But, I would have to know if Sjogren's can cause ON, an immune response within the CSF with the oligoclonal banding.
The spinal tap would be considered positive toward the diagnosis of MS. It is not required to have an elevated IgG Index, though that is usually seen when there are bands present. Both those tests demonstrate immune activity in the CSF which is normally not there. If the Index is not elevated (but O-bands are present) it would indicate that there is also quite a bit of immune activity occuring in the rest of the body - such as you might have with an autoimmune disease.
The CSF protein can be normal or slightly elevated in MS. Extremely high protein values would suggest a CNS infection.
So if it is your age, then you need a third opinion with a specialist who has the education to know that MS can and is diagnosed well into the seventh decade (60's) and has the courage to say so. Also the foci of increased intensites on your MRI are in the classic MS locations. Just becasue you are out on the <1% on the bell curve doesn't mean they should withhold the diagnosis. Your neuro sounds like a little bit of a wus...
I should warn you that, although I am a physician, I am not a neurologist and am no longer in practice. Welcome, again. If you need me to point you toward the ltierature talking about diagnosing MS in the "older" (hah!!!) population, I can see if I can find some good references.
Quix, MD
There have documented and confirmed diagnoses of MS as young as 18 months and as "old" as 72 years. I recently read an article from Spain (I think) profiling over 110 people who were diagnosed with MS after age 60. We have one on this forum, Siddy. I was diagnosed at age 55.
Have you had any discreet attacks of neurologic dysfunction other than the Optic Neuritis? Have you had MRI's of your spinal cord? That would be very important. I also would like to know if you have any abnormalities on your phsycial (neuro) exam other than loss of vision.
I can't see why you don't already carry a Definite MS diagnosis. But, I would have to know if Sjogren's can cause ON, an immune response within the CSF with the oligoclonal banding.
The spinal tap would be considered positive toward the diagnosis of MS. It is not required to have an elevated IgG Index, though that is usually seen when there are bands present. Both those tests demonstrate immune activity in the CSF which is normally not there. If the Index is not elevated (but O-bands are present) it would indicate that there is also quite a bit of immune activity occuring in the rest of the body - such as you might have with an autoimmune disease.
The CSF protein can be normal or slightly elevated in MS. Extremely high protein values would suggest a CNS infection.
So if it is your age, then you need a third opinion with a specialist who has the education to know that MS can and is diagnosed well into the seventh decade (60's) and has the courage to say so. Also the foci of increased intensites on your MRI are in the classic MS locations. Just becasue you are out on the <1% on the bell curve doesn't mean they should withhold the diagnosis. Your neuro sounds like a little bit of a wus...
I should warn you that, although I am a physician, I am not a neurologist and am no longer in practice. Welcome, again. If you need me to point you toward the ltierature talking about diagnosing MS in the "older" (hah!!!) population, I can see if I can find some good references.
Quix, MD
Hi Heather
Sorry I just figured-out how this forum works, and my have posted my question several times. But thanks for your answer. Yes, all other test point to MS. THe optic nerve did in fact enhance on MRI. I think my age has the MS Specialist worried about providing and MS dx.
Thanks agin
Danny
Sorry I just figured-out how this forum works, and my have posted my question several times. But thanks for your answer. Yes, all other test point to MS. THe optic nerve did in fact enhance on MRI. I think my age has the MS Specialist worried about providing and MS dx.
Thanks agin
Danny
Have you done some reading up on Sjogrens Syndrome, on your own? As you know, alot of different disorders can cause lesions in the brain. I am a little skeptical, since your lesions appear near the ventricules of the brain. But things other than MS can also appear there.
You may not know, but I have been diagnosed with MS for 12 years. I have several lesions adjacent to the ventricules of the brain. This is typically found in someone with MS. My question to you, is your neurological exam. Are the findings on MRI consistent with the finding on your physical exam. Do you have a report from the Neuro about what his findings are? Not the MRI findings.
When Quix gets back, I would like to know if the Ig levels are suppose to be elvated in the spinal fluid. I thought the would be in a diagnosis or probable diagnosis of MS.
Were any lesions seen on the Optic Nerve during your MRI? There are so many questions when thinking about your post. Of course, I am not a doctor; merely a layperson that is trying to give you some support.....
Hang in there, utnil Quix get to feeling better and maybe she can answer your question. Dern I wish we had a Neruologist following this board. It's a shame we can't get more answers from our local Neuro's. Everytime I come out of a Neuro's office, I have more questions than I have answers. Do you feel that way, also?
Bless you, Heather
You may not know, but I have been diagnosed with MS for 12 years. I have several lesions adjacent to the ventricules of the brain. This is typically found in someone with MS. My question to you, is your neurological exam. Are the findings on MRI consistent with the finding on your physical exam. Do you have a report from the Neuro about what his findings are? Not the MRI findings.
When Quix gets back, I would like to know if the Ig levels are suppose to be elvated in the spinal fluid. I thought the would be in a diagnosis or probable diagnosis of MS.
Were any lesions seen on the Optic Nerve during your MRI? There are so many questions when thinking about your post. Of course, I am not a doctor; merely a layperson that is trying to give you some support.....
Hang in there, utnil Quix get to feeling better and maybe she can answer your question. Dern I wish we had a Neruologist following this board. It's a shame we can't get more answers from our local Neuro's. Everytime I come out of a Neuro's office, I have more questions than I have answers. Do you feel that way, also?
Bless you, Heather
Please be aware that our expert, Quix is having eye trouble tonight and cannot respond to everyone, but she will I am sure as soon as she can. Welcome to our forum!
Terrie
Terrie
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