Kidney Dysfunction in Lupus: Find A Doctor who You Can Trust

» lifewiththetwins - Find A Doctor who You Can Trust

I have been living with the symptoms of lupus for several years. Unfortunately my family doctor has not taken me seriously and has diagnosed me with bordom and depression. After 8 yrs of my complaining (I thought I was "describing" but let's not complain about every misunderstanding) the doctor sent me to a rheumatologist. I waited about three months from this point to see the specialist who simply wanted to ask me questions about past sexual abuse and prodded me to decribe specific incidences to him because he thought it would help me to talk about it. He took so much blood that I passed out and sent me home. On the follow up visit he told me I had fibro and mentioned that I should not complain because other people in the world die of cancer. (This seemed particularly cruel since on the previous visit I mentioned that I had looked after my mother while she died of cancer)
Another year has passed. From the beginning I have asked my family doctor if it wasn't the lupus I suspected than could it be MS. He told me that I would be way worse off it were MS. (I have trouble walking, talking, breathing, sleeping, eating, and have cognitive difficulties) Finally he grudgingly sent me to a neurologist who found that MS appeared present in my MRI. (I don't have the rest of my test results until Feb.) Thank God the neurologist listened to me. He mentioned that many of my symptoms may be due to kidney problems. Again, I had discussed my fear of kidney involvement with my family doctor who agian told me he was not at all concerned. Now I have to wait several more months before I can see a nephronologist (?).

About 2 yrs ago I noticed that I was having trouble digesting heavy meals. Through some trial and error I came to know that dairy products and meat were too much for me. I had not had a bowel movement without the use of laxatives for about 10 years. I mostly just stayed bloated but about every six weeks I used an over the counter laxative. I went on a vegan diet (no animal products) and within three days my bowels started to move on their own and my energy came back and I had NO joint pain. I did well for about one year than I started feeling a heaviness that I could not believe. Slowly I became too weak, then numb, etc, etc. One evening I took a laxative and I awoke in the middle of the night with severe pain in my back where my kidneys are and both of my hands were excruitatingly painful. I awoke in the morning and saw that my eyes were extremely swollen and I had hives on my face. I told the doctor who told me not to worry about it. He suggested B12 shots. The first one worked, the second one worked but I noticed pain in my liver area (again he told me I was imagining it) The third shot caused debilatating pain throughout my liver and intestines. I went to a book and read that B12 goes straight to the liver when there is too much in the body. I mentioned all this to the neurologist who told me that people who have kidney problems sometimes intinctively stop eating protien and suggested I not take anymore B12. I was shocked! I went back on the vegan diet and within three days my bowels started to move again and after a week all of my joint pain went away again. Unfortuanetly my hips joints are so bad I can't walk without a cane. I don't know if I have permanently lost a portion of my kidney functioning, and I now know that I have had MS for years. I still don't know if I have lupus but I do know that MS can accompany lupus although it is not very common.

Anyway if you suspect your kidneys are in trouble, I hope you will persist in getting the help you need. Out of all my present health concerns my kidneys scare me the most. I thought I was taking care of myself and I thought I was getting the medical advice I needed while all along my body has been falling apart.
Lori

-- posted by lifewiththetwins