The Lupus Forum banner

1 - 20 of 22 Posts

·
Registered
Joined
·
150 Posts
Discussion Starter #1
just been in hsopital with 'very serious ' flare attacked brain and spinal chord a abodomenn and lungs. very very scaryy . had derliurm and has messsed brain up. needed lots intavnous steroids and then lots ivig. home now but more infusiions neded 3 weekly. eyesigt going - optic neurits and wseakness rigt side lots worser. bbut worse of all was head going - was very confsuded when in. and got very sick in few shours. just thoughte those know me like to know. thiking of you alla nd everyone with this horirrble illness

take crare

cathy x
 

·
Registered
Joined
·
7,800 Posts
Hi cathy and ((((((hugs))))))

I'm so sorry you've been that ill. It must indeed have been pretty scary :(

Sending loads of healing hugs your way, I hope they help a little

:grouphug2: :hug:

Katharine
 

·
elisabethm
Joined
·
512 Posts
Hi cathy what an experience you have had i do hope that you feel a bit better soon sending you Best Wishes And A Speedy Recovery Elisabeth
 

·
Registered
Joined
·
6,152 Posts
Dear ((((((((Cathy))))))))

Im very sorry to hear you have been so ill :worried: Thank you for taking the time to let us know how you are. I hope the infusions help to beat down this flare. I will be thinking of you and rooting for the best outcome. You have had such a terrible journey with your Lupus :sad:

If you can, let us know how you are doing over the next while.

Much love and strength to you
Joan:rose:
 

·
Registered
Joined
·
3,471 Posts
Hiya Cathjy so glad to saee your back home, chill out now and take it eeasy hugs Lin x
 

·
Registered
Joined
·
4,968 Posts
I am thinking of you...

I care about you...

I am here for you....(pm me if you need to)

We love you...

Understand you...

And sympathize with you.

Feel better soon.

xxxxx ooooo
 

·
Moderator
Joined
·
11,408 Posts
(((Cathy)))

Sending you big soft gentle hugs your way. I am sorry to hear how ill you have been.:worried: How very scary for you.

Thank you for letting us know how you are doing. If you feel up to it keep us informed.
Love,
Lyn
 

·
Registered
Joined
·
1,999 Posts
Cathy, I am so very sorry you have been battling this. I know well the messed up thoughts of a brain "attack". I went thru steroid psychosis 17 years ago. Take care of yourself, rest, take lots of naps, sounds weird I know, but you will need them for your brain to heal.

Do keep us posted on how you are doing. Keep your doctor up to date on your status. Keep a symptom journal or diary and take it in when you see your doctor. They need to know what is going on with your world.
Sending healing hugs to you.
Sally
 

·
Registered
Joined
·
553 Posts
((((((((((Cathy))))))))))

So sorry to hear you have been so poorly. I am glad to hear you are home now and wish you a speedy recovery. Sending lots of hugs and thoughts your way.

Claire xxx
 

·
Registered
Joined
·
182 Posts
:hugbetter::foryou: Sorry to hear you not feeling good, just wanted to say you in my thoughts and prayers and hope you take care of yourself.
 

·
Registered
Joined
·
4,369 Posts
:hug:Lots of hugs Cathy!

You have been so much already and I hope things get back on track very soon!

Love and hugs!
 

·
Registered
Joined
·
931 Posts
((((((((Cathy))))))))) :hugbetter:

I'm so very sorry to hear of this latest flare..... :(

I think of you often and wonder how you are doing and how things are with you....

I hope the more frequent IVIG infusions and iv steroids will help bring you some relief and improvements... :blush:

Sending all the strengthening and healing hugs I can muster your way and keeping my fingers, toes and eyes crossed that things will get better for you very very soon :grouphug2: :hug::fingers:

Hang in there Cathy...

:flowery:

Zoi
 

·
Administrator
Joined
·
7,566 Posts
Cathy

I am so sorry that you have had to go through this. Wishing you a very speedy recovery.

Hugs

Deb
 

·
Registered
Joined
·
150 Posts
Discussion Starter #17
thank you all your lovely kind words. yes is and was very very scary. still some delirum and other symptoms of course. ivig was very helolpful though as they steroids did not help very quickly. also told I had devic's disease - anyone else got it? apparently it's all caused by sthe lupus but in me cause ms-like phenomenons.

thank you allls again

cathy x
 

·
Registered
Joined
·
931 Posts
Hey Cathy,

Devic's disease or neuromyelitis optica (N.M.O.) as it is sometimes called is, very roughly speaking of course, a fancy name for an optic neuritis/transverse myelitis disease combo. I was told I had Devic's disease at some point, caused by the cns lupus.

There isn't a lot of information out there on Devic's disease as it is generally a pretty rare condition. I found that what little info I was able to dig up on the net was discouraging for the most part when I started looking a couple of years ago. However when I spent a little more time looking I found out I was wrong; according to the articles I found (and from what my docs had told me) Devic's disease has highly variable progression and outcomes (much like most diseases) and has been found to respond to various different treatments in different people.

I've listed a few links speaking of a girl with NMO succesfuly treated with cellcept, twenty five patients with NMO treated with rituximab and a case report of a man with SLE and Devic's disease:

http://rheumatology.oxfordjournals.org/cgi/content/full/45/7/913

http://archneur.ama-assn.org/cgi/content/full/65/11/1443

http://rheumatology.oxfordjournals.org/cgi/content/full/41/4/470

You may find you need to try different treatments, like rituxan or cytoxan or cellcept or imuran or you might find that the IVIG and iv steroids you're on now are helping your flares and so your meds may remain the same.

Whatever happens treatment-wise though and however bad things are, please please bear in mind that things can and do get better. They may take a while, in my case it took three excruciatingly torturous years and a year and a half of complete blindness but things DID improve in the end, and it might look like continuous hospital treatments, horrible flares followed by more flares and disease progression is all there is, but I can assure you that it's not. And however distant the good" stuff" seems, it won't forever be unreachable, unattainable, distant...

Sending loads and loads of healing hugs your way :grouphug2: :grhug:

:flowery:

Zoi
 

·
Registered
Joined
·
150 Posts
Discussion Starter #20
bless you zoi, id didn't know you had devics' as well!!!!!!!

i only told this last addmission and yes reading it iss grim when i lookedb but as you say, we are figters aren't we! why are we so rare thoough! i mean why!!!

i was on imuran, steroids, now ivig, mycophenolate, steroids. see how goes. i not able hav rituximab or cyclo as immunedeficeney cvid (anothere rare thing!) and soo i coulds get sepsticamia from them i am told!

is all very very s scary butr sounds funny knowings you had and battles it, means so much to me. thank u so much tellings me this. you heloped me no end. and i believe we fighting for good things! good times aftesall this!

god bless you zoi

cahty x
 
1 - 20 of 22 Posts
Top