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Jul 5, 2017 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

My problem is that I moved from Atlanta where I had been diagnosed and treated until I moved to Florida. I live in a small tourist town with few doctors that specialize in this type of Lupus. The only one locally doesn’t take my insurances and I am not able to cover the uncovered expenses so I am back to looking for someone once again. I am so happy to have found this site. It has been wonderful to find others who has the same symptoms or even understands what it is like to be dealing with this rare form of Lupus. It seems that each of you all also have multiple other serious health conditions that you are also dealing with. The pain, the fatigue, the skin issues, the headaches, etc, etc. It finally seems to me that there are some common denominators we all share and leaves me hopeful our stories will help find answers about this disease. Yes, I do agree with the theory of staying away from pain meds, but this has been a 40 year battle for me and to just be able to walk I have no other options left anymore. I have been told my only other option would be a Spinal Cord Stimulator and I may have waited to long and don’t know where I would find a doctor like I had in Atlanta. But, yes regardless of the symptoms we do have to keep moving. I am also going to look into contacting the Florida Mayo Clinic to see if they can help. Please take care everyone and stay strong and please keep sharing, you don’t know just who you might be helping!

Jul 5, 2017 · Tumid Lupus in Autoimmune Diseases

Just saw your post. I am trying to find a doctor that can treat me so I don’t have answers. Although I too have the same problem. I have red splotches on my arms that never go away and will fade to a almost unseeable, but then I when I go in the sun they will begin to get a brighter red. Depending on how much time and how often I am in the sun depends on how much they slightly raise and turn brighter red. And as for the heat, I too have problems and usually at night after dinnertime. I will get so hot that I have to spray myself down with cold water and turn my ac down low and leave it that way until I cool off. I can’t say it freezes my skin, but I am very uncomfortable when air blows directly on my skin.

Jul 5, 2017 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

I would like some advice. I was diagnosed with Tumid lupus in 2010. I recently waited months to see a rheumatologist and when I finally got to see him he tells me that he would not believe my test results because they were not from a doctor IN Atlanta. Didn’t matter that the doctor who diagnosed me was in the most affluent area of North Atlanta and all his hospital and doctor associations ARE in Atlanta. It also did not matter that my test were run 3 times to make sure they had the right diagnosis. He also stated that there is no such thing as Tumid Lupus it is just a name some use, but that there is only SLE and Cutaneous types of lupus. Without any test or examination other that to ask me if I could bend my knees backwards and him taking a quick glance at the tops of my hands. He told me that my problem is called Degenerative Joint Disease and that I have some type of a painful skin problems. My treatment was the following: he would tell my primary doctor that I need to learn to sleep better using a website he suggested, to eat better and avoid anything that causes me pain and learn to alter doing what does cause me pain and do it another way. (I cannot walk or stand without pain) He will also suggest that my primary doctor run an ANA test but that it won’t diagnosis my “type” of lupus (I never was diagnosed that way) it was by biopsy. He also told me I need to learn to wear dark clothes from head to toe along with sunglasses and a hat if I have to go out in the sun. He also suggested I change to going outside from sundown to sunrise. He also gave me a study of the skin and body and how the sun and environment affect someone like me. I will be honest I can usually follow along pretty well with medical explanations, but other than a few words like, dna, enzymes, etc I had no idea what he was talking about. He then handed me a card and told me if I ever needed him to make an appointment other than that he was just going to send his recommendations for follow up care to my primary doctor. He then handed me a visit slip and said it was nice to meet me and he went to his next patient. He never asked what I do to control my symptoms, what test I have and haven’t had he never really asked me any real questions he mainly just talked and lectured. I am at a loss as to what to think and do. I’m wondering do I just wait until my hair all falls out (my newest problem) or do I continue to look for answers? And most of all is Tumid lupus the same as Cutaneous Lupus?

Apr 14, 2017 · Tumid Lupus with SLE Symptoms? in Autoimmune Diseases

Hi, I was diagnosed with Tumid Lupus in 2010 in Atlanta and shortly after that moved to the coast. I really haven’t received any medical care related to the lupus. Although my health has continued to decline so far none of my doctors have related any of them to my diagnosis of Tumid Lupus. I have just recently started to see a new doctor who thinks that my problems are related to lupus, but he listed it as unspecified SLE with unspecified organ involvement. He has ordered several blood test, written new creams for my skin and I now have an appointment with a rheumatologist in June. I have begun to do a search and have found a lot of information on SLE, but very little information on Tumid. I would appreciate any information and advice of what questions I should be asking and what if any connection there is between the two types of lupus. My docotr also stated that I will probably want to start thinking about some of the drugs available for this problem. I had seen another rheumatologist because one of my doctors think I suffer from RA. I wasn’t comfortable with him after he told me that if I was going to be his patient I would do everything he says and take every medication he tells me to take. And on the first visit he wanted to give me several injections of medications I had never heard of. I am very sensitive and allergic to many medications and I felt that he was telling me I would have no say in my own care, so I left and didn’t follow up. Probably not wise, but I am so ready for answers this time. Any information and advice will be very greatly appreciated. I seem to have a lot to learn.

Thanks in advance, and I feel so fortunate to have found a site with someone else who has the same diagnosis. There is just so little out there about this and I have not found anyone until now who has first hand knowledge. 🙂