Aa
What causes oligoclonal bands in CSF only besides MS?
Hello, so I have not been diagnosed with MS but it seems this is the most appropriate community for my questions. I have been suffering some mystery illness for at least 8 years now. About six months ago I was refered to an MS specialist. Had MRI that showed 8 nonspecific white matter lesions that the MD did not think was MS. Just after the MRI (so around 6 months ago) I started having vision problems. The eye doc said I had optic disc enlargement in one eye and sent me back to same MS guy. Another MRI was done, 4 months after the 1st and showed no changes. Optic MRI was normal.......
SO THEN (and here is where it gets relevant) I had a LP. The LP (analzed by mayo clinic) said I have 4 Oigoclonal bands in my CSF and that it was considered a positive result. I was actually glad to see this positive result because "finally," I thought, "some answers and proof it's not in my head (so to speak)."
I followed up with MS guy on Monday and he said it's not MS because the MRI had no changes in 4 months and didn't have the correct lesion pattern. He doesn't want to treat it because he thinks the risk of the meds outweigh the benefits in light of this uncertainty. I was emotional and probably being unreasonable but felt like he was suggesting the "crazy" card. I couldn't stop crying and my husband finished the appointment without me. He is reffering me to a nuerologist at UW and has no clue what to diagnose me with other than crazy.
Any ideas? What can cause symptoms similar to MS that can also cause the oligoclonal bands to appear in the CSF. Had the lyme bloodwork done a year ago, it was negative. I know I don't break down B12 right. So even though levels in my blood read high, I don't get enough and take a special form that is already broke down. I was diagnosed with negative ANA lupus (many argue that isn't possible) 5 years ago but the plaquenil didn't help. The rhuem now says I don't have that.
My medical issues have caused so much distress over the years. I am on antideprssants and see a psychiatrist. I even took xanax for awhile because I was told all my symptoms could be anxiety. I took it as ordered for two months and, while it made my kids bad behavior seem less annoying and often amusing, it didn't get rid of the other symptoms. I am almost convinced it's all in my head too but would love any suggestions. Sorry so long winded, thanks for listening!
SO THEN (and here is where it gets relevant) I had a LP. The LP (analzed by mayo clinic) said I have 4 Oigoclonal bands in my CSF and that it was considered a positive result. I was actually glad to see this positive result because "finally," I thought, "some answers and proof it's not in my head (so to speak)."
I followed up with MS guy on Monday and he said it's not MS because the MRI had no changes in 4 months and didn't have the correct lesion pattern. He doesn't want to treat it because he thinks the risk of the meds outweigh the benefits in light of this uncertainty. I was emotional and probably being unreasonable but felt like he was suggesting the "crazy" card. I couldn't stop crying and my husband finished the appointment without me. He is reffering me to a nuerologist at UW and has no clue what to diagnose me with other than crazy.
Any ideas? What can cause symptoms similar to MS that can also cause the oligoclonal bands to appear in the CSF. Had the lyme bloodwork done a year ago, it was negative. I know I don't break down B12 right. So even though levels in my blood read high, I don't get enough and take a special form that is already broke down. I was diagnosed with negative ANA lupus (many argue that isn't possible) 5 years ago but the plaquenil didn't help. The rhuem now says I don't have that.
My medical issues have caused so much distress over the years. I am on antideprssants and see a psychiatrist. I even took xanax for awhile because I was told all my symptoms could be anxiety. I took it as ordered for two months and, while it made my kids bad behavior seem less annoying and often amusing, it didn't get rid of the other symptoms. I am almost convinced it's all in my head too but would love any suggestions. Sorry so long winded, thanks for listening!
COMMUNITY LEADER
Hi and welcome to our little MS community,
IF the LP results show 2+ Obands (4+ for Mayo) unique to the spinal fluid and hasn't been cancelled out because they were also in the blood, it is definitely abnormal and positive but the LP isn't an exclusive test for MS because Oligoclonal bands are also associated with Lyme disease,
Neuromyelitis optica also known as Devic's disease, Systemic lupus erythematosus (SLE), Neurosarcoidosis, Subarachnoid hemorrhage, Syphilis and a few other inflammatory conditions....
Your LP results can only be added to all your other suggestive/consistent test evidence eg brain and spinal MRI's, VEP or OCT, neurological (clinical) assessments, blood tests etc and the totality of your suggestive/consistent objective evidence helps to minimise the potential causation list.
If you have unilateral optic disc enlargement (swelling, inflammation) supported with visual evoked potential (VEP) or Optical coherence tomography (OCT), the MRI not picking it up doesn't mean the visual abnormality doesn't exist, if your ophthalmologist has specifically dx you with optic neuritis it's possible the disc enlargement is something like ischemic optic neuropathy.
It's definitely not in your head, there is objective evidence of something being organically wrong but it's not necessarily pointing towards a neurological condition like MS, 8 years is a long enough time frame to have more suggestive/consistent MRI evidence.....id 100% recommend a second neurological opinion which you're already doing, try to breath you've got more tests ahead of you before they're likely to work it out, so be kind to your self for awhile...
Hope that helps..........JJ
IF the LP results show 2+ Obands (4+ for Mayo) unique to the spinal fluid and hasn't been cancelled out because they were also in the blood, it is definitely abnormal and positive but the LP isn't an exclusive test for MS because Oligoclonal bands are also associated with Lyme disease,
Neuromyelitis optica also known as Devic's disease, Systemic lupus erythematosus (SLE), Neurosarcoidosis, Subarachnoid hemorrhage, Syphilis and a few other inflammatory conditions....
Your LP results can only be added to all your other suggestive/consistent test evidence eg brain and spinal MRI's, VEP or OCT, neurological (clinical) assessments, blood tests etc and the totality of your suggestive/consistent objective evidence helps to minimise the potential causation list.
If you have unilateral optic disc enlargement (swelling, inflammation) supported with visual evoked potential (VEP) or Optical coherence tomography (OCT), the MRI not picking it up doesn't mean the visual abnormality doesn't exist, if your ophthalmologist has specifically dx you with optic neuritis it's possible the disc enlargement is something like ischemic optic neuropathy.
It's definitely not in your head, there is objective evidence of something being organically wrong but it's not necessarily pointing towards a neurological condition like MS, 8 years is a long enough time frame to have more suggestive/consistent MRI evidence.....id 100% recommend a second neurological opinion which you're already doing, try to breath you've got more tests ahead of you before they're likely to work it out, so be kind to your self for awhile...
Hope that helps..........JJ
1 Comments
Thank you Goodmum! I appriciate your reply. It's nice to feel listened to. I have a nuero psych eval in March, that really made me think they believe I am crazy. But my Mom had one done when her epilesy acted up, my sister as well after brain tumor. Not sure how it will help though. Not another copay!
I don't know if this is significant but the cell count in my spianl fluid analysis seemed odd:
% of polymorphonuclear 26 (0-6)
% of mono/macrophages 4 (15-25)
But overall nucleated cell count was 3 which is in normal range (0-5). So does the above abnormal results matter if the overall count was normal? I forgot to ask the ms guy about that (probably because I was in the middle of throwing an hissy fit). Thanks again everyone.
% of polymorphonuclear 26 (0-6)
% of mono/macrophages 4 (15-25)
But overall nucleated cell count was 3 which is in normal range (0-5). So does the above abnormal results matter if the overall count was normal? I forgot to ask the ms guy about that (probably because I was in the middle of throwing an hissy fit). Thanks again everyone.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
