Hello everyone! I am new to the forum. I am so happy to have found it and would like to introduce myself and tell my story a little bit. I will start at my conclusion, I do believe I may be needing a new Rhuemmy. But I am not quite sure. I am also looking for other Lupies who have yet to have a positive ANA. In 2004 I had a complete hysterectomy. There was an error, which resulted in months of hospitalizations and another major surgery, going under about
7 times. I say this because it was two months later that my entire system dramatically changed. All at once, fatigue in a manner I never felt set in, joint pain was extreme, and I had two major infections in my mouth. The first Rheummy I saw told me it was sudden menopause, ignoring the fact I was using an estrogen patch. A few months later I had my first bout of pericarditis (inflammation, but no significant fluid). All along I was seeing a neurologist for a peripheral neuropathy with absolutely no discernible cause. I needed to go on temp disability from my job as a crisis clinician, but I was still a single mother of three. When I went back to work, I soon had another bout of pericarditis and my feet, muscles and legs got worse. It was winter then and I started having joint pain more often. It was then I was referred to a the Rheummy I see now. When she started saying things like "stress" and "depression" (because with my honest history I said I had a history of anxiety and depression from which I was treated and stable for years).... At first I began to cry, proving her theory and then I stated my case, I am not over stressed, or maybe I am, but my stress is not giving me this pain and these symptoms. I had worked out daily for years. As a crisis worker I did shifts at all hours, phone shifts from my home. My energy level was always so high. This fatigue was a very new experience. The pain was new too. It was daily and I didn't even understand it was joint pain. Eventually, I had my first of many partial complex seizures. However, they have never "proved" they were seizures. At that point, the brain fog, word find, hair loss, rashes, mouth sores, all of it, stared. When she put me on prednisone, I becuase extremely anxious and a little paranoid. Thankfully, I realized it and told her. Plaquinil is a Godsend for me. One time I went off of it, and I needed a motor scooter or a can to get around.
My Rheummy has told me I should not work. She has told me we should work on my illness and finding the "right treatment". Now I am home and in the disability process. However, she still will not dx Lupus, calling it UCTD. This is because nothing has shown in my blood. I have attempted to bring up the 11 criteria and the fact the blood work does not need to be met, although it most often is. She, being the doctor, tells me I am wrong. I feel as if it is clear I have more than 4 of the criteria; but time when she has done blood work has it shown up. I believe I even read something about
the ANA not being positive often when people are treated with plaquinil. Does anyone know about
this phenomenon? There are a few reasons having the official dx really matters to me. First is treatment options. She has told me she is treating me for lupus but not giving me the diagnosis. That confuses me and doesn't seem like the best practice. She has thought about
methatrexate. I am not exactly wanting this medication. But even on plaquinil I can't work. If there is the possiblility for a remission, I would most likely try it. I am wondering if a second opinion by a specialist may seem right. Based on my situation, I would love some feedback or some personal experiences.
Also, I was sent by her for a full neurological evaluation to ensure my neurologist did not "miss" a Neuro disease. The neurologist found peripheral neuropathy too and said it appears to be from an autoimmune illness, such as lupus.
Thanks for hearing my story! And I am glad to be here..
Christine: Probable SLE, Nerve Involvement: peripheral Neuropathy,, Brain involvement: Cognitive Problems (word find, brain fog, intermittent confusion) Partial Complex Seizures, Anxiety/Depression , Skin involvement: Sun sensitivity, flare brought on in sun, skin rash in sun, Skin rashes, hives, mouth, lip, nose sores, Hair loss, head sores (slight), Joints/muscles: severe joint pain/some muscle pain, Severe fatigue/daily, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease
(Only blood has been high cholesterol (genetic), One slightly elevated RA factor (which came down), CKT(?) elevated (muscles), and vitamin D deficiencies,
medication: Topomax 200mg (seizures/Nueropahty), Plaqunil 200mg 2 x day, Ultram 50mg as needed for pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, Cybalta, 90 mg Anxiety/depression/ leg pain