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    Had LP and saw MS NP

    I had the dreaded LP today. It was not all *bad*, definatlely way better than my first time. He did have a hard time getting the CSF though, something about my low pressure. Apparently mine was quite low and that took longer than is typical. THey had to tilt the bed so my head was up and I was practically standing. The first time they did this I almost fainted. I got really shaky and felt nauseous, then knew I was going to faint. The nurses knew it to and put the table flat right away. I came right out of it then. Eventually they got enough though. LOL, I can never escape drama when it comes to a procedure.

    Afterwards my MS specialist wanted me to see his NP to be evaluated and possibly put me on IV solumedrol again. She did all the checks, they we talked and she was very reluctant to want to use the steroid b/c of my tachycardic incident on prednisone - even though I did fine at the other hospital on solumedrol. (she appeared to be in the frame of mind of "I will believe that when I see it") She said my heartrate was already high, and she wasn't going to put me on it that way unless I was in patient, even if my heartrate was okay. So, longstory short - no IV solumedrol for me unless it is CRITICAL. Like I can't move my legs or my eye cannot see at all.

    She spent a lot of time going over how I was in a relapse again. Apparently me seeing the "blind area" on Saturday is significant and marks the start of another relapse according to her and the specialist. I asked her if this was the same one as the one in Late NOv/early Dec and I am not sure exactly what she said, but in the end she said this was a new "flare."

    So, I am just connecting dots here. If the specialist thinks this is a new flare, and I already had a flare in late Nov/early Dec, and I have an abnormal VEP and have ON and have lesions in my brain (could be from migraine could be from MS) and he mentioned on on my spine - doesn't this mean I meet the criteria for diagnosis even without the LP? I haven't talked to him, so mabey he is still concerned about the brain lesions - headache vs MS.

    Plus, it was a bit disconcerting to have a medical professional talking about my relapse and remittance phases when I haven't been diagnosised yet.

    Okay - well that was my day - for what it was worth and it all happened during a blizzard!
    Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
    ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

    #2
    Glad your LP is done, and perhaps it will be the final test that gives you a definite answer.

    My history is similar with a MRI that was not conclusive, did show lesions that could be migraine related. I had an abnormal VEP and a case of ON that went on for a very long time, no steroids. Eventually it resolved. My EMG was negative. LP clinched a diagnosis of MS for me.

    I did have IV steroid treatment for another incident of ON in the other eye. Both eyes improved over time to the same degree, one with treatment, one without and I've even had improvement a few years later. That is not typical, but it is what happened to me.

    Let us know when you get your results!

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      #3
      Glad your LP went relatively well.

      Based on your collective posts, I'm curious about something. Why are you being managed by NPs and PAs and not directly by MDs?

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        #4
        When my ON started I of course did not know it was ON. I went to an eye doctor. He suspected it was a serous retinal detachment in the very early stages and wasn't showing up on the tests OR an optical migraine and sent me home to wait two weeks. I had been seeing a neurology PA for some time b/c of a migraine incident that landed me in the hospital for a week. (nonretractable status migraine - which the PA now suspects was a flare) She was managing my headache care. I called her b/c my vision was getting worse and I did not believe it was an optical migraine at all. She insisted I go back that following Wednesday - which I did (I was seen the Fri following Thanksgiving - day after).

        My eye doctor decided that day it was retrobulbar optic neuritis and told me I would need a neurologist. Since I had seen one of the neurologists at the practice where my PA who manages my headaches is - I asked him to call Dr. N. He did and they tried to get me in that day but could only manage the next day with a doctor I had never met. I didn't end up liking her, she is the one who said it wasn't ON b/c you couldn't see it on the MRI, and for many other reasons. She wanted me to see a specialist. Since then I have only seen my PA because I trust her to manage this, she has over 30 years experience and the doctor I saw inpatient both times from that same practice Dr.N is awesome - and she is the one that manages my PA.

        So that is why I see that PA. The reason I saw the NP yesterday is b/c it was short notice and the MS specialist wanted me evaluated but couldn't see me. So his NP did it for him. She was actually quite good. Seemed to know her stuff.
        Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
        ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

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          #5
          Glad your LP went well. My neuro is the only one who will do LP's He's very careful. I've been w/ him & his wonderful nurse for going on 11yrs.
          After all this time I'm selfish & go w/ who gives me the best care! No matter how many " Letters" after thier name.
          Afterall it's you who has this MonSter,& who better knows thier own body!
          Keep us posted God Bless Nona Judy

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