Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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mommies4 06/13/2012

~ Calling ALL Lupus suffers !

Many come to this Forum looking for sx,advice , and symtpons in search of there on Experiences .. myself included , so I wanted to see if as many of you as poss. would be so kind to add alittle of your info to help others !

I have Experienced in the last 2 yrs DETERIORATING muscle weakness
amoung many other sx ,without a dx of my own yet and still in search !

I have titerted between MS and Lupus to name 2 MCTD or something witin
I find you and this forum to be one of the most Experienced with ppl of great knowledge and most kindness ... Can we please help with the unknown and pass our knowledge I'm one to be most Greatful ..

Thank you all for your Participation !!!

GREATFULLY YOUR ANGIE

deleted_user 06/15/2012

Hi Angie, I mean this in the most respectful way but I don't understand your abbreviations so I can't respond to your message. Like, not to be dumb, but what is MCTD? I don't even know what sx stands for. Maybe I shouldn't have quit school before the 3rd grade! Please clarify. Thanks, summer

mommies4 06/16/2012

Hi Summernow ,

Sorry for the confusion, ( sx) is for( symptoms)
MCTD ~ is , Mixed Connective tissue Disease ....

Not taken disrespectful at all ... Thanks for posting !

Angie

RJRelaxing 06/16/2012

Hi Angie,
I am here trying to put symtoms together with the different illnesses that I have. Having a lot of new symptoms. Need a neurologist but can't afford one at this time. No insurance. So I am learning a lot through these forums. I have found a lot of support and tried to give support where I can. -RJ

RichieD 06/17/2012

I was diagnosed with chronic fatigue syndrome, but my symptoms include so many lupus indicators that I'm fairly sure now that I have lupus.

I've lost faith in local doctors and testing labs after seeing all the blunders they've made and hearing the really ignorant statements they've made to me. Also, I don't have nearly enough money to go shopping around for doctors, not with the sky-high prices specialists are charging lately.

Some of my prominent lupus symptoms are malar rashes, low white-cell counts, heart valve problems, repeated bouts with pleurisy, arthritis in my hands and feet, and extreme sun sensitivity.

I have eight out of the eleven ACR criteria for lupus diagnosis, only four are recommended as minimal for diagnosis.

I've been coping by changing my lifestyle to reduce stress, eating a lot of fresh vegetables, and limiting my sun exposure by doing outside work early in the morning or in the evening.

I have a lot of trouble with walking, and I get a lot of muscle pain.

If this is any help to those who are struggling to find a diagnosis like I am, it's worth going over it again in this thread. I find it's better not to think too much about all my symptoms and I try instead to make some kind of life for myself with positive things like gardening.

deleted_user 06/19/2012

Thanks, Angie! I'm certainly not a physician but I'm going to respond as a psychologist and see if anyone agrees--or not. In psychology, it's really pretty rare for someone NOT to have sort of a mixed diagnosis. Most of the SSRI's for example are for anxiety and depression. Some work better or less well with OCD or other illlnesses that are described separately. I know when I'm not producing saliva it's Sjogren's, not lupus, but I'm clueless about which illness is causing my muscle pain to spike. Of course, your MD needs to dx you to treat you but from my experience, my Rheumatologist feel that predisone will help with the new lupus rash AND the dry mouth. I guess what I wonder is-are most of these illnesses on a continuum? Is there a lot of co-morbidity? There sure is in psychology! Maybe one dx can't really account for all your symptoms and you do have a "mixed variety". I'll bet a lot of us do. As I said, this is just a stab in the dark, I'm not a physician, but the body is so complicated. I would think that putting a sticker on one illness too quickly would be or could be an oversimplification. Mixed is not "NO DIAGNOSIS" to my ears. It means you are unfortunate enough to have a lot going on in your little body. Wonder what the rest of you think. xoxo Summer

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