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Thread: Off to the Neurologist

  1. #1
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    Default Off to the Neurologist

    I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by Jaha View Post
    I am off to CC tomorrow to see my neurologist about the SFN and the vasculitis in my Brain. I had a Rtx infusion on Dec 9th and have had a lot of weird things happen since then. My WBC, neutrophils and lymphs have all about doubled. I took a round of antibiotics because we thought I might have an infection and they are still quite high. I am also having a lot of pain and numbness in my head, face and ears. I also am having a lot of nerve pain in hands, feet and chest. My pulse is irregular and I have been very tired all the time. I don't know what is going on but I hope she will have some suggestions. This stuff really sucks!!
    Sorry to hear this and hope their consultation and evaluation provide some help for you so things improve soon.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Sorry about this, will be thinking of you today. Best to you.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Hang tough kiddo...it's worth fighting! Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  5. #5
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    Best wishes will keep you in my prayers

  6. #6
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    Hope all goes well today and that the neuro can get things sorted out.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I'm back from the Neurologist and she had me get an EKG and some labs done. She is weining me off of cymbalta and starting me on another medication for the SFN pain. She has also ordered another MRI of the head, to see if I have more vascular changes happening or anything else. The labs that She ordered is going to check for possible CLL and also some things for my heart. She asked me if I thought that the rtx might not be working anymore. I told her that I really did not know, I just know that I feel like crap and that my #'s are all raising instead of going down. I will know more when my tests results come back, but for now I will just keep doing what I can and rest when I don't feel good.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  8. #8
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    Which neurologist did you see today?
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #9
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    I saw Dr. Jinny Tavee, She had dx'd me last year with both SFN and vascular involvement in the Brain. She is a great doctor and I feel real confident she will get to the bottom of this.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  10. #10
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    Quote Originally Posted by Jaha View Post
    I saw Dr. Jinny Tavee, She had dx'd me last year with both SFN and vascular involvement in the Brain. She is a great doctor and I feel real confident she will get to the bottom of this.
    That's great!! She and Dr Villa Forte work well together.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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