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magistramarla
01-17-2008, 08:42 PM
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

hatlady
01-18-2008, 06:47 AM
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!

browneyedgirl53
01-18-2008, 08:09 PM
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

mnjodette
01-18-2008, 08:15 PM
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!'

Saysusie
01-20-2008, 09:58 AM
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

Oluwa
02-18-2008, 10:17 AM
Marla,

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

Thinking of you,
Oluwa