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Possible MS with Oligoclonal bands

I am a female age 45 1/2. About 3 months ago I developed numbness in my feet the day after lifting my 7 y.o niece and feeling like I hurt my back. This traveled up the back of my legs and affected buttocks and groin. Took steroids and NSAIDS and numbness receded back to feet where it persists. Tests show vitamin D deficiency and low B12, abnormally high folic acid. MMA normal suggesting neurological symptoms not from low B12. Many tests and possible diagnoses later I am referred to neurologst and get full MRI, which finds no brain lesions, but does find a herniated thoracic disc with osteophyte extending 3mm and impressing on spinal cord. Spinal cavity is large enough but also have exaggerated kyphosis curvature of spine which causes cord to pull across that spot. Some evidence of spinal cord narrowing at that level and lesion present at that level, but more in the middle of cord. Neurosurgeon thinks symptoms likely result of that pressure and recommends conservative management due to difficult and severe risks of surgery. Brain MRI shows no abnormalities. Neurologist still wants to rule out MS with spinal tap, as lesion was not next to impressioon and she said sometimes MS lesions form at the level of disk herniations. Spinal tap showed 7 white blood cells (normal is up to 5) and reveals presence of oligoclonal bands. Looking back, wondering if what I experienced a week or two after giving birth 3.5 years ago was MS attack...had sudden blurrier vision with halos around white electronic type on black screens and dizziness. Eye exam showed reasonably good vision (it used to be exceptional...beyond what could be tested for) and they said it was exhaustion...I had almost no sleep in couple weeks after giving birth. Had a CAT scan because they were afraid of a blood clot of something which was negative and the attributed dizziness to fluid imbalance after birth (I did have swollen ankles).  Halo effect  and dizziness improved after a week or several weeks but vision still noticeably worse in left eye, though not enough to need glasses. Currently doing rule-out tests for other possible causes of the oligoclonal bands, and going to do a test to see if there is damage to optic nerve. Doc says if it shows damage and other causes ruled out that I should start preventative injectable meds for MS. If not she recommends new MRI in six months. Does this sound reasonable? As I understand it oligoclonal bands are NEVER normal. If rule out tests for other conditions find no other possible cause, is MS diagnosis absolutely inevitable, and if so should I start injectable meds even if optic nerve test normal (doc said she would put me on them now if I felt strongly about it)? Also is lack of lesions anywhere but spinal cord worrisome in terms of possibly being progressive v. relapsing/remitting? I have not had fatigue, or noticed any increase in symptoms from hot tub or sauna use, though I did just feel unwell and tired and needed my asthma inhaler after too much time in hot sun last week.
Best Answer
5112396 tn?1378017983
Hi Jenna! Welcome to the forum!

Many of us have permanent or sporadic vision issues that make reading large blocks of texts difficult. If you break your posts into more bite-size portions, you may get more respondents (I know there are some days I see a long post and just skip it, not because I'm unconcerned, but because I just can't do it that day).

This is an interesting one. When I began reading, it seemed like everything was explained by your spinal issues. The oligoclonal band results came as a surprise to me. As this test was ordered by a neurologist, I assume there was a blood sample taken at the same visit? (the o-bands must be unique to the spinal fluid sample). This is not a home-run test for MS. As you said, they're still in the ruling-out phase. This, plus follow up MRIs is standard, and a competent course of action (caveat: I'm just a person with MS, not a medical professional, but this is what most of us experienced too).

When to begin disease modifying drugs, if that becomes an option for you after further testing, is a very personal decision. Some feel more comfortable waiting for MRI evidence or a further relapse, others go with the earliest possible moment approach even if there is a small question mark or the diagnosis is still technically CIS. If you have a good relationship with your neurologist, I'm sure they will be happy to discuss this with you should the time come.

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Avatar universal
Hi Jenna. Actually, the tech doing the test can tell right away if the VEP is abnormal. (Mainly they're just looking for a significant delay.) It's all computerized so there's no room for 'interpretation.' The tech is not allowed to comment on it, however. I'm assuming they fax it to the neuro, so really it's a matter of when the neuro gets back to  you.

Good luck.

ess
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Avatar universal
Thanks Kyle

I am getting the Evoked Potentials test tomorrow. Neurologist says if that is abnormal (assuming it is not NO I guess)  it will be an MS diagnosis and I should start the meds. Anyone know how long it takes to get the results of that test?
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1831849 tn?1383228392
There can be a great deal of similarity between MS and neuromyelitis optica (NO, aka Devic's disease). Both are demyelinating diseases and both can attack the optic nerve. There is a newly identified biomarker for NO, which may be what your neuro is looking for.

The o-bands themselves just indicate that there is inflammation somewhere. If the o-bands are unique to the CSF then the inflammation is somewhere in the central nervous system. They don't tell you what caused the inflammation or give any indication of whether or not the inflammation is going to recur.It's unlikely that an MS neuro would base a diagnosis solely on the presence or absence of o-bands.

Kyle
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Avatar universal
Thanks for the tips on posting, new here and on some boards hitting return for a paragraph automatically posts

I see it doesn't here which is great.

Yes the oligoclonal bands came as a big surprise and shock to me as well, I also thought everything was explained by spinal issues and wasn't really worried about an MS diagnosis anymore until the results came back. A blood test was done at the same time, my neurologist is a specialist in MS.

Unfortunately when I look at the differential diagnosis for Oligoclonal bands most of the options seem clearly not something I have because I don't have symptoms, or have already been ruled out, or are something worse. Neurologist is doing a test for neuromyelitis optica that is going to the Mayo clinic. I imagine that may take awhile. That seems to possibly fit but sounds like it is often more disabling so hope it is not that.

I am wondering if Sjogren's syndrome is a possibility as I've had irritated eyes the past 3 and a half months or so, usually in absence of nasal symptoms, I have assumed hayfever but it is unusual for me to have so much eye irritation without other symptoms and I've had allergies all my life.

I guess what I'm wondering is that if there is no other explanation for the bands, is it inevitable that I will get future attacks or worsening, or do some people with the bands never go on to have diagnosable MS? If it is a sure thing it seems logical to go on the meds to lessen possible disability from future attacks, but if some people don't ever have another attack, daily injections and possible side effects are a lot to do for a "maybe".  

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