Devic's Support Google Group

Re: going to neuro-opth next week

2009-11-25T06:16:04Z

Judy, that is great news that you don't have MS or Devic's! How did Dr.
Carlow rule those out? Is it because your eye problems are not caused by ON?

Also, you indicated that your insurance company would change in January and
that Mayo would be covered. Then you said that you had an appointment with

Re: going to neuro-opth next week

2009-11-25T03:36:54Z

so Judy,

You have not had any spinal cord lesions, just problems with your eyes? I suggest you get a good doctor because a misdiagnosis of MS then a misdiagnosis of NMO - what next?? What evidence was there to dx with you either of these diseases? Those docs couldn't identify ON?
You're too smart to settle for this crap. I'm not understanding all this.

Re: going to neuro-opth next week

2009-11-25T03:17:29Z

Hi Shannon,

Supportive evidence is that the VEP is able to show whether of not
there has been past damage. Also, if you have had repeated attacks of
ON, there is definite pallor evident in the nerve.

Gracie

Re: going to neuro-opth next week

2009-11-25T03:13:20Z

what does he mean no signs. I am just wandering because I just got over a flare and my MRI showed signs of inhansment.I was put in hospital for 4 days on solumedal and then on oral pred. Have you not had the inhansment on the mri before. I get so cunfused on all this. This is my second time in 6 months. I hope he knows what he is doing for you. I didnt like him much.Give all you can on your info.Is there evidence in your eyes when not in a flare. The optic nerve is not swollen when not in a flare.What suports evidence. shannon in farmington

Re: going to neuro-opth next week

2009-11-25T03:02:52Z

Hi Judy,

This is actually good news because it proves that the doc is actively
looking. As soon as you have a flare, call them so that you can be
examined and have further testing done.

XOXP
Gracie

Re: going to neuro-opth next week

2009-11-25T02:10:17Z

well, I am home now. I have some good news and some bad news.

OK, for the good news. I don't have MS or Devics. There is NO
evidence in my eyes that I have EVER had ON.

OK, for the bad news. Dr. Carlow says that I need to wait for another
flare, then have tests run. I could have 1 of 20 different diseases.

Re: Unsubcribe

2009-11-25T01:58:09Z

Hi Sheila,

I've got your old account deleted and your new one set up. Tell Dawn
that I LOVE the photo of her in the white outfit with the cap on.
It's the one where the hat has the bill off to the side. Awesome
photo!

Love,
Grace

Unsubcribe

2009-11-25T01:26:01Z

I would like to unsubcribe to this group under this email account.I have applied for membership under my new emil address SheliaSheck...@sistamoonfounda tionfordevicsdisease.com

Updates from SistaMoon

2009-11-25T00:44:30Z

I have been hearing back from some of our nations Political leaders regarding more funding for the National Institutes of Health (NIH) as it relates to rare diseases and regarding health care reform. I am proud to say that all the letter writing and phone calls to some of our U.S. Senators, the White House, Canadian Officials and by working along with other organizations such as Genetic Alliance, The American Medical Association (AMA) The Democratic Congressional Campaign Committee, we are making more and more people aware of Devic's Disease and some changes are being made.

Happy Holidays

2009-11-24T18:40:58Z

A friend sent me this, I thought I would pass it along. Have a Great day and Happy Holidays!
There once was a man who had nothing for his family to eat. He had an old rifle and three bullets.
So, he decided that he would go out hunting and kill some wild game for dinner.
As he went down the road, he saw a rabbit. He shot at the rabbit and missed it. The rabbit ran away.

Re: PLEASE WELCOME SARA LOUD FROM THE ACCELERATED CURE.

2009-11-24T15:05:24Z

Lisa,

Unfortunately, our protocol specifies that that the draw occurs via
venipuncture of antecubital vein in arm of subject

Sara

Re: PLEASE WELCOME SARA LOUD FROM THE ACCELERATED CURE.

2009-11-24T15:04:14Z

Here's some additional clarification on enrolling children.....

5 of our collection sites are able to enroll children. The age ranges
of the children they are allowed to enroll varies from site to site.
It's best to check with the site (and you can do this through me) if
you are interested in knowing more about a specific site. Also, the

Re: PLEASE WELCOME SARA LOUD FROM THE ACCELERATED CURE.

2009-11-24T14:54:15Z

Lisa,

Unfortunately, Atlanta is one of the sites that does NOT enroll
pediatric subjects. I'm going to post a clarifying post on pediatric
enrollments. See "below" :-)

Sara

Re: Feeling

2009-11-24T05:25:41Z

Hi Shannon,

I am thinking only positive thoughts for you. Please let us know what the doctor says.

hugs,
Linda
----- Original Message -----
From: Shannon<mailto:schra...@shockw are.com>
To: Devics-support@googlegroups.co m<mailto:Devics-support@google groups.com>
Sent: Monday, November 23, 2009 8:00 PM

Re: Thankful Things

2009-11-24T04:24:54Z

I am Thankful for many of the same things especially God. Happy Thanksgiving to you and everyone here in the group

Shelia Sheckles
Founder & CEO
SistaMoon Foundation for Devic's Disease
[link]

To: Devics-support@googlegroups.co m

I know we've done stuff like this before, but here it is. Please feel free to add to it. Things I am thankful for: