Hello all, I have Bilateral Internuclear ophthalmoplegia. They can only find one lesion on my MRI. They can NOT find the lesions causing the BINO in my brainstem. I have all the symptoms of MS. I have two Neurologist and one neuro opthamologist telling me I have MS. My CSF does NOT show the Oligoclonal bands. ALL my test come back negative.
This all started when I had surgery five years ago on my right shoulder and my left leg was paralyzed after surgery and has never fully recovered. Now my body / muscles ache constantly and it seems like something new happens to me weekly. Ive had this BINO for more than 8 months...
I ask because I am seeing my MS neuro and am wondering do I start medication? You would think THREE doctors telling me I have MS would be enough but for some reason I can't get on board. NO BANDS. The docs are calling me A-typical. Okay.
People speak of Flare ups? when does it get better? Does it get better with Meds? I am just so tired and weak.
One thing about the CSF and I dont know if it matters but the hospital screwed up and forgot to take blood when they did the tap. They then called me a week later to rush in to draw blood so they could send out my CSF for testing. So my spinal fluid sat around for a week somewhere before they figured out it needed to be sent out for the test. Is it still viable?
IDK do I have MS?
Thanks all!
This all started when I had surgery five years ago on my right shoulder and my left leg was paralyzed after surgery and has never fully recovered. Now my body / muscles ache constantly and it seems like something new happens to me weekly. Ive had this BINO for more than 8 months...
I ask because I am seeing my MS neuro and am wondering do I start medication? You would think THREE doctors telling me I have MS would be enough but for some reason I can't get on board. NO BANDS. The docs are calling me A-typical. Okay.
People speak of Flare ups? when does it get better? Does it get better with Meds? I am just so tired and weak.
One thing about the CSF and I dont know if it matters but the hospital screwed up and forgot to take blood when they did the tap. They then called me a week later to rush in to draw blood so they could send out my CSF for testing. So my spinal fluid sat around for a week somewhere before they figured out it needed to be sent out for the test. Is it still viable?
IDK do I have MS?
Thanks all!
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