Test results are in, devastating news

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momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 1/18/2008 2:58 PM (GMT -6)   
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!
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5765
   Posted 1/18/2008 3:19 PM (GMT -6)   
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,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


FW
Regular Member


Date Joined May 2007
Total Posts : 447
   Posted 1/18/2008 5:00 PM (GMT -6)   
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.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/18/2008 6:21 PM (GMT -6)   
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

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/18/2008 8:34 PM (GMT -6)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 1/18/2008 8:57 PM (GMT -6)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/18/2008 9:29 PM (GMT -6)   
(((( 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
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds: Imuran, Plaquenil, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/18/2008 10:05 PM (GMT -6)   
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
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 1/18/2008 10:05 PM (GMT -6)   
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.
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/18/2008 11:46 PM (GMT -6)   
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
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


momof2girls
Regular Member


Date Joined Jan 2008
Total Posts : 30
   Posted 1/19/2008 12:04 AM (GMT -6)   
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.
Lupus and Sjogrens Syndrome since 1995
 
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day


tash32
Regular Member


Date Joined Aug 2004
Total Posts : 233
   Posted 1/19/2008 3:54 AM (GMT -6)   
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

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2813
   Posted 1/19/2008 5:37 PM (GMT -6)   
Sorry you had such bad news. Know that we're here for you and care about you. Take care and God Bless.

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/20/2008 2:21 PM (GMT -6)   

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


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/21/2008 7:02 PM (GMT -6)   
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)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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