Of course we would not be infuriated with you.  You have to make your own decision.  We just want you to do so with your eyes open and with all the facts.  

Tracy
---- [email address removed] wrote: 
=============

I am thankful for everyone's input....you are opening my eyes in a different way. I am so sorry to hear of the lives lost to NMO :( I think you guys are right, I am 32 with two children and I should count my blessings if the drugs can keep me active in their lives for now! It's just a hard concept for me to swallow...my mom has been diagnosed with MS for 20 years and only needs a cane. She swears she is better than most because she didn't bombard her body with the drugs and instead takes vitamins and exercises. I realize MS is a different animal, but it is still embedded in my brain. I will post again after my appt. I realize that with some of your guys experiences, my hesitation may upset or even infuriate you, and I am sorry for that. The spectrum community, I am finding, IS the best way to get to 'the truth' of what may happen. Thank you again!
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Paul,

I am so sorry to hear about Susan.  My heart is breaking for you.  I

will be keeping you and your family in my prayers and pray that you

will be comforted by God's presence.
Tracy
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Hi again,

I too was initially diagnosed with MS (a lot of us were) and did daily

Copaxone injections for 5 months.  Yes, the MS drugs can make NMO

worse.  My initial symptom was optic neuritis.  Then 5 months later

optic neuritis again in the same eye.  Then 3 months later optic

neuritis in the left eye, right sided weakness, foot drop on the

right.  4 months later I woke up blind in both eyes and unable to

walk.  I consider myself extremely fortunate as I have never been

paralyzed.  Since the big attack in May 2008 I've relapsed every 3-4

months but nothing as bad as that attack.  I've been in a wheelchair

4-5 times and each time have been able to do PT and get back out of

it.  I have permanent foot drop and right sided weakness, balance

issues and both legs are numb.
Everyone with this disease is different.  Some are fortunate and have

very minimal symptoms, like you.  I would not say you have had NO

attacks.  Having symptoms of foot drop, weakness, and some numb spots

would be considered an attack (or attacks) regardless of how mild.

However, NMO can be very aggressive and you never know when your next

attack is going to be.  There have been those who have only had one

attack and ended up paralyzed, those that have had only one attack for

several years and then suddenly had another attack that put them in a

wheelchair or blind in one or both eyes.
The first line treatment for NMO is Imuran (Azathioprine) with or

without steroids.  I failed on Imuran.  I was on it for 6 months and

continued to relapse.  I'm now on Rituxan and haven't relapsed since

March of this year, 8 months!  This is the longest I've gone without a

relapse and I'm ecstatic!
There is a lot of research material on the Spectrum website.  Start

reading and learn everything you can about this disease.  Your

decision to treat or not treat has to be your own.  For me, however, I

would never consider not treating as I've seen too many have severe

attacks just out of the blue when they thought they were stable.
We just had an NMO Conference in LA last week with all the top

research and clinical doctors in NMO.  They all said you should treat

and not wait.  The Conference was very exciting and we learned so

much.  My brain is full right now but as soon as I get a few minutes

to myself I'm going to try to put my thoughts together and post about

it.  At some point there will be pictures and video up on the Spectrum

website so you can actually listen to the doctors and break out

sessions.  It was awesome.
Tracy
p.s.  Oh, could you please sign your posts so I don't have to just say

"hey you"!  Thanks!  LOL
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Hi Carla,

Glad your Dad was able to see Dr. Weinshenker.  I've met him a few

times now (both at the NMO Patient Day - 2010 and 2011) and he is

totally amazing! I'm afraid I don't have any suggestions on him

getting some sleep.  If Ambien is not working or not lasting then

maybe something like low dose Valium to help instead of Ambien.  There

are all kinds of homepathic remedies out there to help with symptoms

of NMO but nothing that is going to help prevent relapses or help you

get OVER a relapse.
Keep us updated on how he continues to do.  I did my initial

treatments of plasma exchange (7 treatments over 14 days) and then

once a month for another 7 months.  My vision slowly came back over a

years time and my attack was stopped.  I then went to PT and gained my

strength back.  I've not had another attack quite as bad as that one

so haven't had to had plasma exchange again.
Tracy
On Nov 14, 2011, at 6:19 PM, [email address removed] wrote:
Today we visited with Dr. Weinshenker in Rochester - nice gentleman.

Dad has gone thru 8 plasma exchanges and had some improvement -

nothing major with his eyesight.  Still hopeful as last treatment was

just 11-11-11.  Started him on oral Predisone for 6 months or so and

also Septra, just a low dose as a preventive antibiotic.  Continue on

CellCept - crossing fingers that it prevents any more relapses.

Constipation has been another issue and inability of getting a good

nights rest - even with being so exhausted.  He does take Ambien but

only lasts for 2 hours and then wide awake.  Any suggestions?  Any

successful homeopathic remedies for NMO?

Open for any ideas - thanks!

Carla
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11/07/2011 One more LAST Update to the NMO Patient Day attendee list. I've added in the cities, states of those who emailed them to me and also added Johane Joseph. 


Ali Guthy
Alice Buerkle and Ed van Schupen (Idaho)
Amparo Nisembaum Alas
Anita Dudley (Mobile, AL)
Anne and Bob Port and Michael Freda
Bob and Marlene Hunter (Menlo Park, CA)
Brenda Polczynski (Orlando, FL)
Brooke, Eric and Ireland Thomas
Carol and Dave Adams (and maybe Jill) (Indianapolis, IN)
Caroline, Kristi and Don Hinckley
Cherie and Louie Ruiz (Hampstead, Maryland)
Christine Barton
Christine Ha and John Suh
Christine and Gary Kryshak
Dora Chan and Grant Ritchie (Toronto, Ontario, Canada)
Dorissa Strong Jana
Erin Miller
Gina Burghezi
Gracie Mitchell
Heather and Brenda Sowalla (Cherry Tree, PA)
Iwanna Mav
Jan Friend (Flat Rock, Michigan)
Jayden and Norman Barett
Jenna Drolet
Jennifer Bratt
Jesus and Maria Loreto (Miami, FL)
Johane Joseph (NY)
Josephine and John Mihalopoulos (Downers Grove, IL)
Julie Konkel
Kasee and Jeremy Zaerr (Kansas City, MO)
Lauren Crowe (Dallas, TX)
Lauren Kellye Ransom (Arlington, VA), Sharon and Judy (Las Vegas)
Layo Oyewole (Arlington, VA)
Lea and James Long (Atlanta, GA)
Lin Rosenstiel (Madison, Wisconsin)
Lisa Martin
Lynn and Ashley Copeland (Western New York)
Mia and Chelsea Byard
Michelle and Gary Dean
Nancy Christopherson (Crossville, TN)(flying out of Nashville)
Natalia Segedova (Slovakia)
Paula Dean-Luce
Rachel Tracy
Shannon Chrapko
Sue and John Mikalian (Granger, IL)(flying out of Chicago)
Stacey Pope
Thia Parodi
Tina and Chad Comey
Tracy Owens (Spring Valley, CA)

11/07/2011 LAST Update to the NMO Patient Day attendee list. I've added in the cities, states of those who emailed them to me and also added in Natalia Segedova, Layo Oyewole, and Lauren Kellye Ransom and her Mom Sharon (NMO patient) and Aunt Judy. 


Ali Guthy
Alice Buerkle and Ed van Schupen (Idaho)
Amparo Nisembaum Alas
Anita Dudley (Mobile, AL)
Anne and Bob Port and Michael Freda
Bob and Marlene Hunter (Menlo Park, CA)
Brenda Polczynski (Orlando, FL)
Brooke, Eric and Ireland Thomas
Carol and Dave Adams (and maybe Jill) (Indianapolis, IN)
Caroline, Kristi and Don Hinckley
Cherie and Louie Ruiz (Hampstead, Maryland)
Christine Barton
Christine Ha and John Suh
Christine and Gary Kryshak
Dora Chan and Grant Ritchie (Toronto, Ontario, Canada)
Dorissa Strong Jana
Erin Miller
Gina Burghezi
Gracie Mitchell
Heather and Brenda Sowalla (Cherry Tree, PA)
Iwanna Mav
Jan Friend (Flat Rock, Michigan)
Jayden and Norman Barett
Jenna Drolet
Jennifer Bratt
Jesus and Maria Loreto
Josephine and John Mihalopoulos (Downers Grove, IL)
Julie Konkel
Kasee and Jeremy Zaerr (Kansas City, MO)
Lauren Crowe (Dallas, TX)
Lauren Kellye Ransom (Arlington, VA), Sharon and Judy (Las Vegas)
Layo Oyewole (Arlington, VA)
Lea and James Long (Atlanta, GA)
Lin Rosenstiel (Madison, Wisconsin)
Lisa Martin
Lynn and Ashley Copeland (Western New York)
Mia and Chelsea Byard
Michelle and Gary Dean
Nancy Christopherson (Crossville, TN)(flying out of Nashville)
Natalia Segedova (Slovakia)
Paula Dean-Luce
Rachel Tracy
Shannon Chrapko
Sue and John Mikalian (Granger, IL)(flying out of Chicago)
Stacey Pope
Thia Parodi
Tina and Chad Comey
Tracy Owens (Spring Valley, CA)

Considering that you are having problems with your eyes I didn't even

really notice any typing errors.  Maybe I should get MY eyes checked.

LOL

Tracy
On Nov 2, 2011, at 12:18 PM, [email address removed] wrote:
LOL!!  oh, by the way, PLEASE forgive all my typing errors.  My eyes

are really bothering me.  Sorry if my posts are messed up sometimes.  :)
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I don't know how fast they get it up online so it may not be available

as quickly as Thursday.  I believe they'll post on Spectrum when it is

up and available.

Tracy
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Thanks Michelle!

Tracy
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I got home a little bit ago from my DMV driving test.  I passed!  Not

only did I pass but I aced it!  He didn't mark me down for anything

and even wrote on there "GOOD DRIVING"!  Yay!  Now he sends his report

to the Drivers Safety Office to the officer who did my medical review

and that officer will put her stamp of approval on it.  Now I have a

license with a restriction on it for the hand controls but that's

okay!  YAY ME!!!

Tracy
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