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Old 08-25-2014, 10:02 AM #1
bddouglas bddouglas is offline
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Default Now, where do I turn?

I went to the MS specialist today. My neuro sent me to him to rule out MS. Well, because I have O-bands in my serum (though they are more prominent in the CSF) and there are no lesions on spinal cord. He says this is all indicative of it not being MS. His recommendation to my neuro is going to be: repeat brain MRI every year for the next 5 years and if there are no changes then the subject is dead in the water.

So, I guess I am back at square one. I want to thank all of you for your wonderful support and humor.
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Old 08-25-2014, 11:38 AM #2
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Sounds like it may be MS but just not ready to commit to that,
so we waitttttttttttt. . You can wait with us if you wish..
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Old 08-25-2014, 11:51 AM #3
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I thought you had earlier brain MRIs that showed lesions? Add that to the o-bands and it certainly sounds like MS, I never heard of needing lesions in the spinal cord to be diagnosed. O-bands, igg/albumin ratio and lesions in the CNS, brain, spine or both. Tricky to diagnose I'll grant you, but I got my dx without lesions present in the spine.

Even got compliments on how pretty, straight and open my spine is, other than the spots with bulging disks. My spine is clear, my brain isn't. But then we both live in the south where they'd much rather dx diabetes for everything than MS.
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Old 08-25-2014, 02:25 PM #4
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In 2007, my brain MRI had 2 "spots", the most current brain MRI (3/2014) shows 20+"spots". The CT the ER did a year ago showed no signs of any "bleeds", so I just don't know...I do know my symptoms are not my imagination. They both seem to dismiss so much. Each of them seemed to focus their exam on different areas, like there is no uniformity. And yes, there seems to be a focus on my blood sugar. My fasting blood sugar has been running about 114-116, but my a1c is 5.3, not diabetes.

Time for me to pull up my boot straps and steel my determination and press on until I get some kind of diagnosis.

Y'all are wonderful! Thanks for being here!
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Old 08-25-2014, 06:55 PM #5
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To my knowledge, all they've ever done for MRIs in my case has been brain and neck, no lower. I had a positive lumbar puncture (o-bands). My symptoms for the most part were very non-specific, except for having L'Hermittes Sign and girdle-band sensation - those 2 symptoms sealed the deal, so to speak, on it being MS.

I've since had Optic Neuritis, but considering my neuro guesses I had MS at least 5 years prior to being diagnosed in 2008, I have done pretty well as far as avoiding massive progression. Though, there is most definitely progression (some symptoms now never resolve and are permanently there - mild, moderate, or severe, depending on the day).

Long story short, hearing "you have no lesions on your spine, therefore it's not MS" is maddening. I'd get a second (or even third) opinion.
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Old 08-26-2014, 01:54 PM #6
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don't give up. keep a watchful eye on your sx's (symptoms) and write them down. keep a sx journal which may be helpful for your dr in the future.

get copies of your test results and copies of the mri's etc. and copies of your dr's notes. start a file on yourself. this will come in handy in case something else comes up or you see any new drs.

good luck. don't be a stranger.
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