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Posting to the communities has been restored. Our technical team is still completing ongoing maintenance, and you may experience some technical problems.Thank you for your continued support and patience, and if you have any further questions, please email

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Viewfinder61 posted:
Hello everyone, my name is Rose. I have had symptoms and a preliminary DX for Lupus SLE. Back then with a house full of young children and insufficient insurance I could not afford to keep the referral appointment with the Rheumatologist which was set up for me by the Internal Medicine doctor who had hospitalized me and put me through a battery of tests.

The pain, joint problems, weight roller coaster, depression and anxiety along with severe fatigue, heart and kidney disease have only worsened and rendered me disabled and feeling lonely. The pain us unbearable at times and I am now about to be introduced to the pain management community as well. I take so much medicine on a daily basis one would think that I am 20 or 30 years older than I am. The stomach problems come and go and at times I have been given Lidocaine solution (2%) to take for immediate relief.

Recently I began to have such severe "Brain Fog" that my children, all grown now, have considered having me placed somewhere or tested for Alzheimer's Disease. The oldest is so frustrated all she can do is ridicule and humiliate me to the point that even on "good days" I don't want to be very sociable because I am concerned that other people may come to the same conclusion or get as frustrated with me as my daughter.
All of these symptoms and more also caused me to join the below poverty level income of the Disabled, so now add limited income to the mix and there is total disarray in my life and mind.
Based on this information is there anyone who can tell me whether the Internal Medicine Specialist who made the dx over 20 years ago after 5 days in the hospital with a battery of tests was correct??????
After all these years the pain and depression, heart and kidney problems among other things including fatigue and odd sleep schedules has even ME frustrated and wondering what's going on. If I could at least find out what it is and have name for it, I could research, study and learn to deal with it. Don't want the daughter to "put me away" if the Brain Fog and occasional memory lapses are simply symptoms of a DX made years ago. Thank you for your time, hope to get some answers and tips.
lupylisa44 responded:
It sounds like you already know the answer to your question. The symptoms you describe do sound like lupus. It sounds like the doctor did extensive testing when he made the diagnosis. If I may ask, what makes you doubt the diagnosis that was given 20 years ago???

Lupus can affect any organ in the body including kidneys. heart and the brain and can cause all the symptoms you have mentioned.

It sounds like you are seeing a doctor currently based on the fact that you have been given medication for your current issues. What does your current doctor say about what is going on with you? Have you mentioned your lupus diagnosis from 20 years ago? Given your symptoms, It is very important that you follow up with a doctor and get retested so you can be treated properly.
With love, with patience and with faith, we'll make our way.
jujubeee714 responded:

It was long ago and you need new testing most definitely. Isn't there some kind of state insurance or medicaid you can get on, get to a doctor and get tested. Lupus is something that needs medical attention and treatment. The fog issue can be helped with medications.
You really need to do this. Some states you can apply online. You can also go in to your local social security office and ask for help applying for disability. You can do it online at as well.
What's worse? Having your children put you in a nursing home or applying for disability? You must qualify for some help.
In order for a fair assessment you need to see a physician asap.
HUGS, feel better, Julie

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