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    #16
    Hi MeganKJ:

    I am very sorry for this tragic event in your daughter’s life. Many of the replies before mine are very knowledgeable. I just wanted to share with you that I had a Spinal Cord Stroke when I was 28. I was a very healthy, athletic female. Your daughter’s onset is very similar to mine. I woke up at 7am with severe neck and shoulder paid. My arms and hands had numbness and tingling. I went to the hospital. Walked in, but within 2 hours I lost B&B and was unable to walk. I was placed on a respirator. My family hoped it was Guillian-Barre, but it was not. Final diagnosis after 3 MRIs, 2 spinal taps, and many other tests was Spinal Cord Stroke; Infarction. They looked behind my heart for an infection, but found none. In the end, all they could find was the strep throat virus in my blood and they concluded the cell was unable to pass through the small vein feedings the spin and cut off blood flow.

    I hope spinal shock subsides and your daughter experiences significant recovery.

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      #17
      Ok first I want to thank ALL of you form the bottom of my heart! You have been a wonderful source of information and my family and I are truly blessed to have found this god sent website.
      I am going to try my best to explain where Erin is at as of now.
      1st today Erin was seen by yet another neurologist who said that she defiantly had a spinal stroke. All of her ct scans prove it was a stroke.
      Yet at the same time the infection doctor cannot find a source of infection that they thought was the cause of her high temperature. Now they are going to look for an auto immune.
      The neurologist said no to the plasma apheresis/ Ivig because that is only to treat auto immune (not for the swelling that is evident in her ct scans.) Also I asked him if her brain steam is involved and he said he thinks maybe the very bottom of her brain steam was affected. Also I asked him what he thinks her recovery will be and he said “to be honest I think this is it, a lot of nerve damage is already evident on the ct’s” I just know this can’t be it. Please tell me anything you can think of. The neurologist said the best medicine for her is rehab rehab rehab, this I know must be true because you all have stated it as well.
      Also just some more of Erin as of right now (3-02)
      Her WBC went down from 13,000 to 8,000 now it’s at 5,500. To me that sounds like she is fighting an infection, but they said they can’t find it?? I just don’t understand.
      Her urine is almost black and has A LOT of sediment. Her IC Doctor said it could be blood (because she’s on blood thinners) also she’s on a lot of antibiotics and this sometimes causes the urine to turn dark. Is this true or could that be a red flag for something else.
      He urine cultures have all come back negative and her kidney function is fine.
      They also did a blood clotting test and she is a level 5 (??) and she has a history (she stopped completely about 3 years ago) of slight smoking. Also she took BC but has been off for roughly 2 years.
      Is plasma apheresis expensive is that why they keep saying no. They said that it’s not going to help her swelling and it would just be useless and painful for her.
      O yeah and now they are saying that they are not going to do the 2nd spinal tap because of possible brain herniation. That’s the reason they don’t want to do another Spinal Tap. Is this possible?
      I really do want what’s best for my daughter but I don’t want to give up, like I feel her doctors might have. I know that they are trying to do all they can but I don’t think its enough.

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