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Thread: Ccsvi???

  1. #11
    Senior Member willingtocope's Avatar
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    In fact, here's what we're dealing with:

    In a book referenced at: http://www.scribd.com/doc/8817608/MR...-of-MS-Lesions

    on page 140, "In fact, the diagnosis is based on the principle of dissemination in time and space of a disease compatible with MS in the absence of a better explanation"


  2. #12
    Quote Originally Posted by willingtocope View Post
    I'm not a doctor. I've been DX'd with SPMS. Never had a "classic" attack. Symptoms started at around age 62...so...I'm suspicious.
    Just curious about why you were given a SPMS diagnosis if you never had a RRMS diagnosis or pattern??

    SPMS generally needs to be proceded by a RRMS pattern. Are you sure it is not PPMS?? This is what my mother had, and it is the most common type diagnosed in middle age. My mother was 53 when diagnosed with PPMS, which is characterized by a steady downward progression of symptoms and deficits, without either exacerbations or remissions.

    (KLD)

  3. #13
    Quote Originally Posted by SCI-Nurse View Post
    My mother was 53 when diagnosed with PPMS, which is characterized by a steady downward progression of symptoms and deficits, without either exacerbations or remissions.
    I have PPMS and was diagnosed in middle age, as well (first symptoms age 48, "probable" dx age 54, definite dx age 58). Since MS is a diagnosis of exclusion, in a way it is more like a syndrome than a disease - but the different forms do have characteristic trajectories, which (combined with clinical examination, laboratory studies and medical history) qualifies it as a disease. I know that Dr. Young recognizes MS as a disease. In terms of treatment options and outcomes - after everything else has been excluded, and only then - the practical difference between MS as a syndome or a disease becomes almost semantic. In any case, diagnosis can be devilishly difficult.

  4. #14
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    Actually as far as I know it is no longer a dx of exclusion. MRI can clearly show the lesions on brain and spinal column which shows presence of MS disease. I realize that in the early days it may be harder to pinpoint, but in our case, even when he was RRMS, his MRI showed clear evidence.
    I do know that many researchers consider it is possible MS is a collection of related disease processes since some stay RRMS and are never very disabled, and others end up like my husband and are extremely disabled and move from RRMS to SPMS, etc.
    Rebecca
    Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
    Mother of 2 active boys!

  5. #15
    The problem is that lesions evidenced on MRI can be present in a host of neurological conditions. The appearance of the lesions (round v. oval, multilevel v. unifocal, characterization by "fingers" or tentacles, etc.) can be an important clue - but diagnosis still requires the elimination of other similar processes.

  6. #16
    Senior Member willingtocope's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Just curious about why you were given a SPMS diagnosis if you never had a RRMS diagnosis or pattern?? (KLD)
    One of the many questions I'm trying to find a doctor who give me a straight answer.

    Began with a gradual foot drop of my left leg at age 62. Spasticity increased slowly...visted 4 different neuros who all dx'd me according to their speciality over the next 3 years. Still walking (with a wheelie) went to the Mayo in 2010. They said "PPMS...go to Iowa U for rehab". Saw head of MS at Iowa U in 2011...he's the one who said, "No, I see SPMS. I've got 20 yr olds to treat. Nothing I can do for you. Go away, and only come back if it gets worse".

    As we've discussed before, I get "psuedo-exacerbations", usually in the middle of the night. Starts with slight fever, then chills, then extreme weakness. Lasts a couple of hours. Then I get up, and get on with my day. I've never had a "classic" attack.

    I'm still getting around the house with a wheelie, although my legs are getting weaker for lack of real exercise.

  7. #17
    Quote Originally Posted by willingtocope View Post
    Began with a gradual foot drop of my left leg at age 62. Spasticity increased slowly...
    My situation was similar. First I experienced intermittent episodes of myoclonus on the left, accompanied by footdrop after 15 minutes of walking (with rapid recovery); then footdrop following 5 minutes' walking, and slower recovery; then constant footdrop. Rigid spasticity ensued.

    As to why you were initially diagnosed with SPMS (as opposed to RRMS): my guess - and of course, it's only that - is that the diagnosing doctor had reason to believe, based on your history, that you'd actually had prior symptoms that were not recognized as MS (this would have represented the RR phase); by the time you presented to him/her for diagnosis, the symptoms were continual and progressing.

    My diagnosing neuro told me that, based on a detailed medical history, it appeared to her that I might have had symptoms dating back to age 16 - but RRMS can look like a lot of things and is tough to spot initially, so when I got better my previous doctors could have thought everything was okay. According to that scenario, I would have had RRMS, gradually developing into SPMS. But because I presented to the neuro with such an unrelenting picture, and in late middle age, she diagnosed PPMS.

    Maybe something similar applies to you. But who really knows, eh!? Such a confusing picture. With MS, diagnosis appears to be almost as much an art as a science. And it's complicated by the fact that many neuros now recognize a form of MS which is progressive from the outset (PP), but with intermittent periods of exacerbation and relief.
    Last edited by Bonnette; 12-02-2012 at 05:02 PM. Reason: clarification

  8. #18
    Senior Member willingtocope's Avatar
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    Quote Originally Posted by Bonnette View Post
    My diagnosing neuro told me that, based on a detailed medical history, it appeared to her that I had had symptoms dating back to age 16...
    Yeah, the guy at Univ of Iowa laid that on me also. I had bacterial menegitis at 5, herititory "essential tremor", and developed dystonia in my neck in my early 50's...so his conclusion was that I've had MS all my life. This in spite of the fact that I had at least 4 complete MRI sequences begining with a severe back spasm in my mid 20's, including a spinal tap...none of which showed any evidence of MS.

    So...why not Claudia Pnemonia at 5, and my body has been fighting that all these years.

  9. #19
    Quote Originally Posted by willingtocope View Post
    So...why not Claudia Pnemonia at 5, and my body has been fighting that all these years.
    Again, it's only a guess, but I'd say that the law of parsimony applies. With a history of bacterial meningitis at age 5, presumably a culture was performed in order for the doctors to know what they were treating. Maybe C. pneumoniae was to blame and no one spotted it, there's always that possibility - I'm just saying that I understand why your history suggests something else to your doctors.

  10. #20
    Senior Member willingtocope's Avatar
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    I'm sorry...I didn't mean to hijack this thread. The OP's original concern was that people were presuring her to get her spouse treated for CCSVI. My point was...at least get ultrasound done on his neck veins. It just might be CCSVI.

    And...Bonnette...remember, for me, age 5 was 1950. They had just discovered penicillion (sp?). It stopped the infection at the time, but I would be surprised if they knew what specific bacteria they were dealing with. Even now, I understand that its only recently they've started looking for C. pneumonia DNA in spinal fluid.

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