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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marycanelas 09/24/2008

I was diagnosed this morning following a tennsilin test in Boston, MA with Myastenia Gravis, and I have already been diagnosed in the last year or less with SLE and Sjogrens. I am feeling very hopeless, is there anyone else that has all 3 diseases as I do? I have young children, and a wonderful husband and family, and I still feel so alone, I thought I was handling all this new illness so well, but I think today pushed me over my limit. How do I stay positive now? Anyone else with Myastenia please contact me. I appreciate it very much. I am already on IVIg, imuran, prednisone, and plaquenil because I am in a huge angry flare. I am now wondering if my shortness if breath is from the Myastenia???
It has to get better than this, right?

deleted_user 09/25/2008

Yes ma'am I have all three plus polycythemia, raynaurd's, and a few others. I wish I could give you some answers, but I don't have many just being diagnosed with myasthenia gravis a couple of weeks ago. I'm not on treatment for it as I will not let them use contrast dye for the cat scan. I will tell you that I am not on any meds and I will get the shortness of breath from time to time depending on how much I exert myself. I do know how hard it is to stay positive and that there is none who could understand what you are going thru. I get it and I really feel for ya. I think that it does get better, but learning of a new disease is like a mourning process. You mourn your lack of health and go thru the whole range of emotions. Please take care of yourself and find anything to destress. Stress is the killer. I know easier said than done, but it should be on the top of your priority list. You may contact me at any time, if you so desire. I want to leave you with this: the body has an amazing ability to heal itself. Disease is not a death sentence and there are a lot of things that we can do to live a long, healthy life.

deleted_user 09/25/2008

lupus can also interlap a variety of other diseases. my tip for staying positive is writing a journal, force urself to write down 3 things u are grateful for (family, etc)
Know that exercise even the smallest amount u can do everyday, increases your feel good hormones and fights depression. Eating the right foods (fruits, vegetables) instead of junk food decreases your cortisol (inflammation) in your body and also combats depression. Take 1000 mg of fish oil everday has helped me with depression as well.
Lots of luck!

deleted_user 09/25/2008

Cocomail is absolutely right. Just wish I could stomach the fish oil. I hear that the preserved kind might be better and not cause me to be naseous. I might check that out when I have the extra dough.

deleted_user 09/25/2008

Yeah, I can't stomach the fish oil or salmon oil either. I get terrible indigestion from it. Ummm, I do think keeping a food diary might be of help. When symptoms get worse or better ... go over what you ate that day and see what you might want to try to alleviate or add more of.

Keeping you on my mind.

peace and love ... Kyle Anne

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