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Syd Monroe 02-17-2012 11:21 AM

Recent Lupus Diagnosis and honestly scared!

I am 39 yrs old and recently diagnosed with Lupus after years of health problems. I was placed on prednisone 5mg for 6days and i've finished the medicine. I am now waiting to see the ophthamologist before I receive plaquenil. My concern is the wait. I feel like I've had this for some time now and the longer it takes to get the medicine the more damage is being done. My fear is that there is already considerable damage that may not be able to be reversed. I was having bad dizzy spells and numbness before the diagnosis. I have had consistent dizziness and numbness for the last 3 weeks. I have also had a pain on my right side near the back for roughtly 4yrs. At first it was most noticeable when I pressed that area but now it is throbbing regularly. They said I had a renal cyst but did nothing about it because they keep saying the urinalysis is negative. My legs and feet are numb as I type this and I'm dizzy. Should I go to the emergency room. Really scared.

msnova74 02-17-2012 12:44 PM

Re: Recent Lupus Diagnosis and honestly scared!

I am so sorry you are going through this. I have MCTD and know the damage that these diseases can cause.
If you have sudden numbness and dizzyness I would say absolutely go to the ER. Prednisone can have its own host of complications, and anytime you have a sudden symptom such as you are discribing, it is better to be safe than sorry.

Good luck

Syd Monroe 02-17-2012 01:28 PM

Re: Recent Lupus Diagnosis and honestly scared!
Ms Nova,

Thank you so much for your response. I'm sorry you're dealing with MCTD. I'm still feeling the dizziness sitting here at work. I actually went to the hospital yesterday but left because I got tired of waiting. I know that probably wasn't the best decision so I'll probably leave work shortly. I'm also having hair loss and problems with sleep and I wake up throughout the night. Thank you again and many blessings to you.

VeeJ 02-18-2012 11:56 AM

Re: Recent Lupus Diagnosis and honestly scared!
Dear Syd, hi and welcome. Lupus ranges hugely, from mild to severe. So the good news is, it's definitely possible to have it, yet have no permanent damage to major organs (kidneys, heart, lungs, brain). This type of SLE is called "subacute", in contrast to "acute".

Re: your kidney cyst, I have one, too. I was told they're common enough, that mine isn't harming anything (isn't causing any blockage, etc.), and that it has nothing to do with my lupus. But whether YOUR cyst is causing any issues is sure worth asking about & confirming! (I had flank pain, too, but I think mine was related to my chronic bladder misery = burning and frequency.)

If your urinalysis doesn't show protein, and if your BUN and creatinine blood levels are in normal range, I *believe* that suggests your kidneys are filtering properly & are in good shape. But to put your mind at ease, you could ask your doctor or his staff to specify WHICH tests they were alluding to.

Steroids can cause sleeplessness & agitation, even in low doses, I think.

I've been on Plaquenil for 10+ years, and it's helped a lot with pain, fatigue, anemia, urinary & GI problems, hair thinning, migraines, weired neuro problems (numbness & tingling), etc. Even my hair came back to normal, well, more or less, meaning it never was my crowning glory. :D

Especially in the beginning, reading really helped me tame my worst fears. You could borrow books from your local library.

I'm sorry about your diagnosis---nobody wants this!---but I hope there's some comfort & useful ideas in the above. Also, I hope you keep in touch with us, as you'll meet many nice people who are always glad to chat with you. Sending warm wishes, sincerely, Vee

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