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Thread: Need some insight, if you can help?

  1. #1

    Default Need some insight, if you can help?

    Hi there,
    I have been here off and on since 2008(Child neuro 2000-2004)
    I have appreciated all the knowledge people have put forward with all my questions.
    Background: first (possibly second) flare in Dec 2008 with numbness from collarbone down, hug tightness around ribs, l'hermittes, hand motor affected. No treatment, I was referred to a Neuro by march 2009, ms specialist by July with an MRI. MRI showed 3 spinal lesions, nothing "ms like" on brain MRI. Diagnosed with transverse meylitis. That flare took 18months for all to subside with minimal remnant damage. . Continued follow ups with brain Mri's yearly. Another flare, numbness progressing up legs, treated with 5days IV Steriods. That seemed to stop any progression of getting worse.
    Ms specialist saw very little ms like changes in my subsequent mri's but I was having small flares. Tested for Nmo, started on Imuran for nmo possibility. Test came back negative but no breakthrough flares since started. Continued Imuran but started to have sensory flares again. 2weeks on prednisone. Seemed to help. Another brain MRI, ms specialist(who is an MRI specialist) said brain MRI is changed a bit but still now ms like. But the radiologist in his report says this and previous comparison meets McDonald's(sp) criteria. The specialist doesn't seem to care about that statement and refers me to a rheumatologist for Rituxamab infusion for Nmo suspected.

    Wow that was some background eh?
    So I just saw the rheumatologist and is doing a bunch of blood work including for Lupus(I've had a neg test in the past). He says its a great med, and will do it for me now if I want.(it will be covered by my private insurance) but wonders why I haven't had a lumbar puncture look for o-bands and gave me the option to hold off on the med to see how it goes. He feels the neuro must be thinking more to Nmo and wants to prevent anything drastic that could come with that.
    On the other hand I can't help think of the radiologist report saying it meets the criteria for MS.

    What would you do in my shoes?
    I'm lost as to opinion and my family doesn't read anything to Support any decision I can/could make in this so any insight would help!

    Thanks for reading!

  2. #2


    " said brain MRI is changed a bit but still now ms like."
    That should say still NOT ms like!

  3. #3
    Distinguished Community Member agate's Avatar
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    Oct 2006
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    Hi mum2kat+3,

    It's really very difficult to say anything because you're the one who knows your case best. All of us here are just people who don't know much at all except that some of us have read things about MS.

    But rituximab has its possible side effects, and many people find a lumbar puncture hard to take, especially if they're not feeling tiptop in the first place.

    How are you feeling? Do you feel as if you could tolerate (1) rituximab and/or (2) the spinal tap?

    And then there is your gut feeling about the doctors involved. You might want to use that as your guide. Does one of them seem to know you better or be more interested in the details of your case than the others?

    There's the MS specialist/neuro and then there's the rheumatologist, as I see it, and your problem is which one's advice to prefer.

    Based on the information about your symptoms and test results, I can't say what might be wrong. I think your best bet is to think about which doctor has the better understanding of your case.

    The spinal tap would help to determine whether you have MS, but as I say some neuros don't want to give that test simply because it can be pretty uncomfortable, and more and more they're relying on MRIs and other tests instead.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  4. #4
    Distinguished Community Member SalpalSally's Avatar
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    Oct 2006


    It sounds MSy to me. It looks like you and Docs have been working
    together to DX and treat you with meds. I have no idea what to tell
    you to do differently. Don't know anything about Ritux.

    I hope you can figure it all out and you feel better soon.
    Love, Sally

    "The best way out is always through". Robert Frost

  5. #5
    Distinguished Community Member nuthatch's Avatar
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    Oct 2006


    Hi mum,
    I was unfamiliar with the term Nmo, so i looked it up to educate myself a little. I sounds very much like MS, of which I have been diagnosed with for fourteen years. But in my reading up on Nmo, I saw that there is a blood test that they claim can differentiate Nmo from MS.
    The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions.
    You could be one of the 30 percent of those with Nmo who do not show the antibody, (we fondly call that state of uncertainty "limbo land") unless/until at some future date, you clearly show the antibody. The thing is that once you've been checked for the antibody, you may never be checked again for it, even though as I understand it, antibodies "develop".

    On the other hand, I honestly feel that many "diagnosis" are possibly one and the same disease process under a lot of different names. Just a horse of a different color, so to speak.

    While in the diagnosis process I had a lumbar puncture to look for o-bands. I was told at the time it would help confirm a diagnosis of MS, even though my MRI showed lessions in all the "right" places, which is now enough for a diagnosis.
    I personally would not have had done it if I had know then that there are a number of other conditions where o-bands show in the spinal fluid, not just MS. It would be nice if tests were only given that would eliminate conditions, rather than tests that "muddy the waters"!

    Good luck in your quest for answers. All I can tell you is to ask lots of hard questions and be your own advocate.
    We're here to support you.

  6. #6
    Distinguished Community Member SalpalSally's Avatar
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    Oct 2006


    Great post Nut..
    Love, Sally

    "The best way out is always through". Robert Frost

  7. #7


    Thank you for your responses.
    I go back and forth about an LP and Joan, I didn't realize it could mean other diseases until you said this. I looked and found this:

    Diseases associated
    Oligoclonal bands are also found in:

    Multiple sclerosis
    Lyme Disease
    Devic's disease
    Systemic lupus erythematosus
    Subacute sclerosing panencephalitis
    Subarachnoid hemorrhage
    Primary central nervous system lymphoma
    Sjögren's Syndrome
    Guillain-Barre Syndrome

    Well that doesn't help me much does it? Lol!

    I guess my biggest flip flop is: do I continue on Imuran with its potential Side affect and lowering of my immune system?
    Or start rituxamab with the same plus some potential side effects but prevent a potential NMO attack, or stop everything and wait and see or should I start an MS drug to prevent any future flares?

    Really not looking for anyone to answer that of course, I'm more just "talking out Loud" so to speak to maybe see some insight in myself and and experiences people might have had.

    Thanks again!

  8. #8
    Distinguished Community Member Cherie's Avatar
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    Oct 2006
    Southeastern NE


    Often the diagnosis of MS comes only after all other potential illnesses have been ruled out. Except for things like Lyme Disease, most of the possibilities are difficult to treat and see improvement. Even with our arsenal of drugs for MS, no one med works for everyone. You want to be patient and let the docs do their sleuthing to find out what is really going on.

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