well darn 4 years later and doc told me no strokes

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AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/1/2010 9:03 AM (GMT -7)   
well back in 2006 i was told i had had a stroke and 8 mini strokes..i had my new neuro look at my scans and he informed me that i have never had a stroke.. what i had was PRES (Posterior reversible encephalopathy syndrome) well thats good for me since i have lived this long with thinking i have had strokes.. you dont know how comforting this news was too me..was also told i will be on cellcept for 3 years to control my lupus nephritis as well..

i think it sucks that i dont trust my own body to take proper care of itself and im envious of others walking on the streets who dont have to worry about these things.. thats just a tiny update//
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/1/2010 10:59 AM (GMT -7)   
Amy,

That's wonderful news. i'm very happy for you.

The feeling that you describe about your body not being able to take care of itself is one I know well. When the feeling hits me and I see other people walking down the street, I remind myself of all the things I have to be grateful for that they might not have. You never know what's going on in someone else's life and it's easy to assume that their lives are perfect. Be grateful that you're a wonderful person, and I'll bet if you made a list of all the things you have to be grateful for, it would be a long one.

Thanks for the wonderful update!

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/1/2010 11:08 AM (GMT -7)   
Oh Amy that is wonderful news. Even though you had all that worry for so long. You know we all try to tell each other not to take to much stalk in what a doctor says because they don't know every thing. It's hard though I know for a fact.
Patty boy do I know that feel of in my case (jealousy) when a couple walk hand in hand down the street and they have been together for 40 or 50 years. growing old together. I get angry because I know that will never happen for me. You are so right ya just never know.
love ya guys
Lupus lung, maybe, scleraderma maybe, another A/I maybe, Hang nail maybe. COPD
meds to many to fit in my 10 lines. but last count was 28.

 Jesus loves you and so do I!
 
 


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/1/2010 1:17 PM (GMT -7)   
ahhh ya know there are tons of people worse off than me and when a fellow lupie passes it sends a world wind of thoughts in my head...most are often untreated or just finding out about lupus or just in a country where the treatment is not the same...

BIG HUGS ladies...

i often think of you okie.
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg

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