Need Prayer! So Sad and Scared, Neurofibromatosis

Discussion in 'Spirituality/Worship' started by slowden, May 4, 2004.

  1. slowden

    slowden New Member


    I Found out I have genetic disorder Neurofibromatosis!
    WHAT NEXT as if this FM wasn't enough?????????????????

    Found out when I got doctor records from Workers comp for my SSDI ap. Neurologist put it on his evaluation in 1988 that I have neurofibromatosis and cafe au'lait spots and freckles in areas the sun don't shine(I thought it was just birthmarks and a few moles and warts!)Should of been having MRI's at least yearly for most of my life!

    Searched on internet last night for neurofibromatosis resources at Harvard site and found letters from others on personal pages that had signs and symptoms like I have.

    NF1 Neurofibromas and lipomas etc. attacks nerves, organs, cranial & brain stem,eyes, whole body inside and out, & bones and NF2 has mostly Aucoustic Neurofibromas.

    I must have a mild case that didn't activate when I was a kid or teenager. I hope mine hasn't activated and I wish I didn't know about it. Doctors have missed it for years and pregnancy can make them grow faster as well as stress!

    I can't get through to my doctor(who thinks i'm neurotic and thinks every prob i have is FM) that I need a neurologist and full body MRI to see if I have lesions or tumors (which can be benign or cancerous and intertwined in nerves) on my nerve system that can cause a lot of my symptoms as well as a multitude of other health problems.

    My mom died at 42 from breast lump cancer which spread and aunt from brain cancer and dad has lumps on his head and arms. if they both carried the genetic NF OR if the gene mutates then i could have both NF1 and NF2.

    Am so scared now because this DD was bad enough but NF is horrible always waiting to see if neurofibromas or other worse things are growing inside me attaching to my cns system. The horror stories i've read are depressing and I don't want my family to suffer more than they already are.

    I love my family so much, but Feel like leaving and living alone somewhere so my family doesn't suffer IF mine's activated and complications/surgeries cripple or shorten my life span.
    I know God helps us through our trials even if he doesn't heal us completely.Please pray for me and my family!
  2. danny3861

    danny3861 New Member

    Sorry to gear of troubles you are having and going thru. My heart goes out to you. Please keep your faith and the Lord will see you thru this. We are both about the same age and I just know that prayer and my faith, and this worship board keep me going thru my struggles.

    Dear Lord I come to you tonite praying for this young lady, she has many hardships in her life and that you stay by her side, let her feel your presence, especially during the hard times. I pray that this will give peace, comfort, and the strength to endure knowing and feeling you by her side. Lift her up high and help her to remain strong in her faith. I pray all of this in the name of Jesus, amen.

    Danny
  3. Beadlady

    Beadlady Member

    I know how scary it is to have a disease and also not know a lot about it either.

    Stay in touch with us.
    [This Message was Edited on 05/04/2004]
  4. Sandyz

    Sandyz New Member

    I`m sorry to hear you have neurofibromatitis. I`m sure you are very upset and scared. I will be praying for you. Don`t give up and remember we are always here for you.

    God bless,
    Sandy
  5. slowden

    slowden New Member

    God Bless you all! It helps to know someone is praying for me and my family! I am feeling much better now, Thank You!

    Danny, I got chills all over and felt the embracing power of the holy spirit when I read your prayer and every time I re-read it. So much comfort and healing in the name of our Lord, Jesus Christ!
  6. NewEnglander

    NewEnglander New Member

    I pray for your healing over this women and your peace as well.
    I pray that you will make all the crooked places in her life straight and that you will send workers in her harvest.
    I pray for your favor
    In Jesus name I pray
    Lisa