HealingWell
Search Close Search
☰

Test results are in, devastating news

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/18/2008 7:58 PM (GMT 0)
I've been having a CNS lupus flare.  We began treatment w/Pulse steroids this week, due to 100% loss of vision in left eye from Optic neuritis.  I had to have an MRI/MRA done late last night.  When I was getting my infusion this morning at the hospital my RA came to see me.  My MRI/MRA is showing signs of MS.  THey think I have devics syndrome.  It's Lupus/Ms together.  Here is a link: http://www.webcare.md/ArticleDisplay720c2216.aspx

I'm seeing an MS specialist next week to confirm the diagnosis.  I'm so scared!

Posted 1/18/2008 8:19 PM (GMT 0)
Well, that sucks. I do have a friend w/MS who has gone blind in one eye several times over the last 30 years -- it usually takes 2-3 mths of treatment then the nerve gets better and sight is back. Hopefully that is the kind of thing that will happen with you! Hang in there, we'll be thinking of you and wishing you the best,
Posted 1/18/2008 10:00 PM (GMT 0)
Wow - I am so sorry you have to deal with this. Just read from the link you gave - scary stuff. Keeping you in my thoughts and prayers!
Take care.
Posted 1/18/2008 11:21 PM (GMT 0)
Mom,
I am so sorry to hear your news. You will be in our thoughts and prayers. Never give up hope. God Bless You, Judy
Posted 1/19/2008 1:34 AM (GMT 0)
OH NO!!! (((((((((Mom)))))))))))) So sorry to learn that you may have MS as well. . . but happy they have pinpointed the issue so it can be dealt with using the proper meds. A neighbor of mine had sight that would come and go as a result of MS too. Just awful news . . . but glad you have a place to come and share. Do keep us posted sis. Prayers, hugs and blessings . . . and a cup of tea!
Posted 1/19/2008 1:57 AM (GMT 0)
Hello Mom,

 

(((((((((((((hugs))))))))))))))).  I'm so sorry.  I know this must be very scary for you.  I can't imagine a worse combination of diseases.  I'm crying for you right now.  That just isn't fair.  I truly pray that the diagnosis is something else.  Something that can be treated and go away.  Please let us know how your appointment goes okay.  I can't believe you have to wait until next week to know more.  Is it early in the week that you see this specialist?  In the meantime, lean on those around you for support and encouragement.  I know that it will be nearly impossible to think of other things and have a distraction.  Please know we're here for you.

 

Blessings,

Ginny

Posted 1/19/2008 2:29 AM (GMT 0)
(((( Mom ))))) I am so sorry. I just wanted you to know you are in my thoughts and prayers. please keep us updated on how you are doing! Take care
Posted 1/19/2008 3:05 AM (GMT 0)
So sorry for your news.  Praying for wisdom and discernment for your doctors and caregivers.  Also - prayers for peace of mind and spirit for you.

~Kim

Posted 1/19/2008 3:05 AM (GMT 0)
thank you so much.  DH and I are praying that they are wrong.  I don't think they are though.  I am number and can't process the new information yet.  We should find out more next week.  I go in tomorrow morning for last dose of the pulse steroids.
Posted 1/19/2008 4:46 AM (GMT 0)
Mom,

I'm really sorry for what you are dealing with right now. I'm sure that it seems like a nightmare and that you will wake up. I hope you feel that you can release your feelings here on the forum no matter what they are. Sometimes it's easier to vent and let it out here rather than to someone close to you.
I will be thinking of you and your family with lots of positive thoughts and prayers for all of you too.

xoxo emmie
Posted 1/19/2008 5:04 AM (GMT 0)

emmi said...
Mom,

I'm really sorry for what you are dealing with right now. I'm sure that it seems like a nightmare and that you will wake up. I hope you feel that you can release your feelings here on the forum no matter what they are. Sometimes it's easier to vent and let it out here rather than to someone close to you.
I will be thinking of you and your family with lots of positive thoughts and prayers for all of you too.

xoxo emmie

Your right my friends and family don't understand.  They think it's just a matter of adding more meds, but it's so much more than that.  I am exhausted, w a 4 year old and 18 month old at home right now.  This is so hard.  The pulse steroids are making me really sick, I haven't had a chance to really think what this means yet.  Thank you.
Posted 1/19/2008 8:54 AM (GMT 0)
Sorry to hear you are having such a rough time you are in my thoughts and prayers and I hope you get some answers

take care

tash32

Posted 1/19/2008 10:37 PM (GMT 0)
Sorry you had such bad news. Know that we're here for you and care about you. Take care and God Bless.

Barbara
Posted 1/20/2008 7:21 PM (GMT 0)

Mom,

  I'm sorry to hear of your news as well...((Hugs)). I hope your appt goes well and they get you on the proper treatment right away. Please take care and keep us updated. You will be in my thoughts and prayers.

                                                          Babs

Posted 1/22/2008 12:02 AM (GMT 0)
Mom, I can't tell you how sorry I am to hear about your news. I can't imagine how scary and overwhelming all of this must be. I hope that with treatment, you'll notice some improvement in your MS symptoms. Please keep us posted on how things are going and know that we are here for you. You are in my thoughts and prayers. Take care (((((Hugs)))))
✚ New Topic ✚ Reply