Tumid Lupus with SLE Symptoms?

It's like you are writing my story except I am now fighting with a rheumatologist who is trying to say I dont have Lupus, because of course, ana negative, nothing shows, except that I have been suffering and trying to find a diagnosis for my symptoms , every symptom of SLE from mouth nose ulcers to extreme knee pain arthritis in both. It hit me with the rash all over my chest, neck, arms and just extreme fatigue and flu for months. My next appt with the rheumi is this week.How how do I convince or do I even have to convince this dr I have Lupus! My biopsy was with the dermatologis before even seeing her. Any advice would be appreciated!

Oh and biopsy was positive for tumid lupus.

@ddfinn - I'm just joining in on this chat and I don't have time to read all the previous posts so please forgive me if I'm repeating things or come across as ignorant (because I am regarding your situation). It sounds like it might be worth getting a second opinion from another rheumatologist, maybe from a teaching hospital if there is one close by to you. I know I could have diagnosed my daughter with many forms of arthritis when she was younger but had to rely on the expertise of her physician who was used to seeing arthritis much more than I (obviously my daughter having issues starting at age 6 was my introduction). I would go to her appointments with a list of questions that basically questioned her diagnosis and she very calmly answered them all to my satisfaction. Sometimes I was dubious but time, or further research, usually indicated that she was right. If I was not content I certainly would have sought out a second opinion. It is my understanding that rheumatologists must rely more on patient history and examination vs. blood work to get their diagnosis. For example, my daughter was in such a flare that she was in a wheelchair but she never tested positive for an elevated c-reactive protein that is usually present when there is inflammation yet clearly her joints were swollen and her pain so extreme she was in a wheelchair.

Lynn

Welcome to Connect, @ddfinn. I can absolutely imagine your frustration with not getting any answers!

I'd like to introduce you to @seesawer @sandpiper09 @butterflygirl @whyus @regeanna @lisabeans @blindeyepug @piglit @larsona10 and Mentor @johnbishop; you can view their conversation, and shared experiences here:

Systemic lupus erythematosus (SLE) http://mayocl.in/2tdyqVK
Undiagnosed auto immune disease http://mayocl.in/2tG2wCy
Have a few autoimmune disorders - now have consistent low grade fever http://mayocl.in/2tmrbJG

I'd also like to invite @suzyp, who recently posted about a similar experience, to join this discussion

@ddfinn, has the rheumatologist given you an explanation as to what your symptoms could indicate, if not lupus? Are you currently taking any medication to get some relief?

Hello @ddfinn, I would also like to welcome you to Connect. Does your rheumatologist not trust the biopsy results for tumid lupus? I would be pressing them for an answer why and asking more questions. Is it possible to have your dermatologist talk with the rheumatologist? I agree with @lcamino about getting a second opinion if possible.

John

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?

Hello @sandpiper09, I am sorry you are in so much pain and getting very little help, empathy or understanding from your rheumatologist. I am not a medical professional and have no medical training but if possible I would try to get a second opinion. You know better than the rheumatologist what is happening to your body - you may not know why, but you can feel the pain, you know where it hurts and it's up to the doctors to come up with the diagnosis and treatment.

From what I understand from a quick search, there are many different types of Lupus. Here is further information on the types of lupus from Johns Hopkins
http://www.hopkinslupus.org/lupus-info/types-lupus/
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John

@sandpiper09, I have several autoimmune diseases - the latest of which to be diagnosed is Lupus. (I also have RA and Sjogren's). Run to another doctor! I had to go to several doctors before getting my initial diagnosis of Fibromyalgia and then Rheumatoid Arthritis. The doctor you mention sounds like a quack. Is he an MD or an OD? There is a BIG difference. Why can you not see the other doctor who diagnosed you with Lupus? Is the other doctor you went to recommended by him? Yes, the sun will affect you - especially with Lupus. Even some of the medication taken to help treat it give you sun sensitivity. I am on methotrexate which actually works on all three of my autoimmune disorders. Once you get to the right doctor, you will feel hope and find relief. I would not take pain pills if you can help it except for really bad flares. The more pain meds you take, the more you need and the greater the pain seems to be without them. Walking and swimming are great exercises to help with pain. You just have to learn to pace yourself. I find sleeping on a Thermapedic mattress helps. There are bunches of great ideas on these boards which you can try. Some may work for you and others may not. It can be quite the experiment to find what helps you. Once you find it, stick to it. Do your best to keep moving. Resting is important, but resting too much actually causes more pain - makes you stiffer. It is a "dance" between rest and movement that you will learn and it will help. Keeping you in my prayers.

@sandpiper09 - My philosophy has always been that if you do not have confidence in your doctor than you will not do well so I highly recommend you go to another doctor, at a teaching hospital or one of the Mayo Clinics, would be ideal.

Lynn

@sandpiper09 - If the Mayo Clinic is not an option I would see if a teaching hospital is close by and covered by your insurance. They typically have a wide range of specialists who work together which is very beneficial for a diagnosis and treatment.

Lynn