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CNS Lupus

CNS Lupus

So, I was wondering...I just got out of the hospital today. I went in with weakness and numbness on my left side and VERY painful optic neuritis. The doctors there treated me like DIRT, and I mean REAL TRASH. They acted as though I was “malingering” or “faking”! Have any of you ever been through this? I’m laying in bed at home now, after they all basically told me that “there is nothing wrong with me,” yet I have no central vision in my left eye, and my whole left side is weak. Basically… read more

A MyLupusTeam Member said:

Having SLE for 10 years with major complications like alveolar hemorrhage (bleeding lungs), lupus nephritis, etc., life can be cruel! But one thing I am certain with, there’s always hope along this roller coaster journey.
Treating doctors have different approaches and attitude to therapy. It can be frustrating and humiliating at times. My only advice is, be proactive and be patient during initial visits. Your doctor doesn’t know you right away. A good rheumatologist (captain of your ship) and primary md is the key. Know your doctors well and establish a good team work. They will listen to you better and treat you with dignity!
Above all, keep the faith.

Thanks for the great food advice!

posted 11 months ago
A MyLupusTeam Member said:

No you're not alone in being treated harshly..I sometimes think that Dr's ect..view women more as exaggeraters than men.

edited, originally posted 11 months ago
A MyLupusTeam Member said:

I'm so sorry that you went thru that I feel the same way no one gets it I have horrible pain every evening I hate that my daughters see me this way their so young but I feel like the past n is horrible I had to lay down can't move yet when I speak to my doctor I'm fine should I film how I look and feel would my blood work so different results when I'm in pain it's awful feel lost and no support on my end either

posted 11 months ago
A MyLupusTeam Member said:

I Concur!!!!

posted 11 months ago
A MyLupusTeam Member said:

You know, I am NOT happy that some of y’all know what I’m talking about, because NO ONE should be treated like they don’t matter, but I AM glad that a lot of you seem to understand. Being treated like you’re a mental case when you have REAL symptoms, truly hurts! Doctors can be extremely cruel 😡

posted 11 months ago
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