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Hi, I am new actually returning after a long time. Recently I was told by a dermapathologist that I had borderline lupus; I didn't think much of it at the time, but now after reading and becoming more educated about it's many symotms etc... All of this started about one year ago; I was placed on zyrtec,atarax, and kept cortisone creme with me at all times due to the rashes/hives I would get at any given moment. However I developed severe intestinal cramping on the medication. It was making maybe a 10% difference. I was on it for about four month's then could just not tolerate it anymore. I know I need to get in asap w/ a dermatologist (which I also seen) after seeing the dermapathologist. I had started out w/seeing a Rheumatologist; due to severe joint pain, with changes in the shape of fingers. Also I had bumps/nodules around my elbows which too were very stiff at times. We have since changed insurance providers soooooo now I need to have all of my copies of lab work etc. Also I had the rheumi (at the time) write down my diagnoses. He wrote down sjogren's after seeing an opthamologist, and being placed on plaquenil I thought I would start feeling better. The rheumi eventually is the one who sent me to the dermapathologist. My marks left from prior hives/rashes started to get darker,and I told this to my rheumi. He was surprised that I wasn't feeling alot better. I explained to him that my hives were actually getting worse/more frequent. He said to stick it out and stay on the medication long enought to find out if it's helping. I agreed eight weeks later it still wasn't helping me. I received a certified letter in the mail after not going to my next appt. (I called, and was just to sore to go) The letter stated I could no longer be treated by this Dr. who had diagnosed me with sjogren's, arthritis, morphous of lesions, fibromyalgia (which he only touched a few areas on my body maybe 4-5) I tried his treatment plan; stuck with it as long as I could and got a really insensitive letter in the mail;stating I was non compliant. When a patient tells his/her Dr. that it's getting worse, and is worried what a nice way to work things out....just send her a letter. What was he afraid of??? I'm sorry but that is what it seemed like to me. I ask questions at my appt's. I have a list 3-5 most concerning to me at the time. I read alot before my appt's etc. I guess this turned into a vent story.....sorry......just was so upset when this "very reputable Dr.) suddenly didn't want to see me. After that four month roller coaster; I was diagnoses with TMEP it's a mast cell thing; my body has too many, and I'm learning it can stay kind of steady;or it can become systemic even affecting the cns system. This is what scares me the most. I have read lupus patients also can have their cns system effected??????? Any input here would be great; I tried to keep this as clear as possible,but it's hard. My cognitive abilities sometimes seem different?????? Any One heard of Mast cell disease???? When I look up tmep; usually Mast cell disorders are what I get. I guess my body has too many mast cells. ANY INPUT/ADVICE/STORIES would be appreciated more than you know. Thanks for reading my story. Stressed in California. Thanks for you'r help in advance.





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