Results 1 to 6 of 6

Thread: Just checking in

  1. #1
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default Just checking in

    Hello friends,
    I've been lurking and checking on all of you for a while, so I thought that I would check in.
    1. The docs seem pretty sure that I don't have Lupus.
    2. The neuro says that I do have Spinocerebellar Ataxia.
    (a genetic degenerative disease. I'm using a cane now, and will probably go to a walker, then a wheelchair later.)
    3. The ataxia is the cause of the Spasmodic Dysphonia.
    (causes the vocal chords to spasm - I'm getting Botox shots into the vocal chords. No fun, but I'm still talking and teaching.)
    4. It is also the cause of the Meniere's Syndrome.
    (Causes hearing loss, vertigo & tintinitis)
    I have an appointment at the Baylor College of Medicine Movement Disorder Clinic next month. I'll be seeing one of the top docs in the field, so it should be VERY interesting.
    You are all such a sweet, interesting group of people, that I've still kept looking in on you, as well as getting onto the bulletin boards for SD and Ataxia. All three groups have been a great help to me in coping with all of this.
    Thank you all for your understanding as we all deal with chronic illnesses,
    Love,
    Marla

  2. #2
    Join Date
    Oct 2004
    Location
    Illinois
    Posts
    955
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Marla;

    So good to hear from you. Good grief you have a lot going on! Thanks for letting us know what Spinocerebellar Ataxia means - something I've never heard of. I hope they can give you some positive treatment or prognosis when you go to Baylor.

    Hugs and glad you're here!
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

  3. #3
    Join Date
    Jul 2006
    Location
    Seattle, Washington
    Posts
    467
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hey Sweet Lady,

    It seems we never lack in the department of "despair" oh my goodness, I so appreciate all of your participation with all of us. You have added so much to this place and know that I will keep you in my thoughts and prayers, as I know you are doing for me as well.

    Stay close and keep us posted. We love you and appreciate all that you contribute to make this a "kinder" place to be.

    Much love,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

  4. #4
    Join Date
    Sep 2006
    Location
    Minnesota
    Posts
    1,368
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    It's good to hear from you Marla - and it sounds like you're finally getting some answers. Please come visit us often and let us know how you're doing. We're all 'family' here - anyone who lives with chronic illness travels a rough road, and it's one we're all familiar with. Take good care, Marla. We'll be watching for your 'visits!'
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  5. #5
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,738
    Blog Entries
    9
    Thanks
    1,604
    Thanked 924 Times in 587 Posts

    Default

    Hi Marla;
    It has been a while! It was so wonderful to hear from you again. I am so sorry that you are dealing with so many issues now. But, you can always come to us (even if you do not have Lupus) and we will still give you support, understanding, comfort and friendship. We will also try to answer your questions or research information for you!
    You are always among friends here. Keep us posted on how you are doing ok?

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  6. #6
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Marla,

    Checkin' in on you...Have you been to your appointment this month at Baylor yet?

    Thinking of you,
    Oluwa
    I have Lupus. So *^#@! what.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •