Posted 12/31/2009 5:27 PM (GMT -7)
Hey there..Like everyone else..my story is long..but I am going to try to make it as short as possible. First of all... I was finally diagnosed with Lupus after never having a positive ANA ..which is what stopped the lupus diagnosis from happening all these years. And I still have not shown a positive ANA.. I am now told I am in that 3 to 5 % who doesn't. This may mean I am likely to have a milder course of the illness (or so I am told.... ???) In retrospect, I was ALWAYS a little off medically. Meaning quicker to get fatigued and I had raynoids syndrome early in life, frequent fevers with no explanation. But it was not until I had a hysterectomy at age 37 (for very bad endometriosis) that I became extremely ill. The hysterectomy resulted in a major surgery and over 13 visits to the hospital because of a complication.. I lost all the "parts" and was into menopause. Despite being on hormones..my initial symptoms of sudden severe joint pain, fatigue, random infections, and even pericarditis /(inflammation around the heart) were blamed on "the changing hormones in my body. I then developed asthma and ONE lung specialist did an exray and suggested the start of auto immune- he believed it would develop into a lupus diagnosis. I developed peripheral nueropathy, I began to have partial complex seizures, and the joint pain and fatigue worsened. However, my labs were never that bad. I had some elevated sed rates and an one high RF. I have a vitamin D deficiency and more recently something with reactive protein I don't understand. I also have the issue with Rhummy vs Neuro... They have discussed MS from time to time, I have some plaque on my MRI..but I have to Lupus dx as of now and the treatment is helping. So I have decided I don't care what the diagnosis is..as long as the treatment works. Of course, as soon as I decided this, after years of wondering, they diagnosed me with SLE. It can be such a long process. Support is so important. Hugs to you... :) I'm here if you need anything or just want to vent
Happy New Year to you..
SLE, Seizures, Neuopathy, joint pain, CFS, , vitamin D deficiency, Raynoids syndrome, Hx of Pericarditis x 4, Hx of lung inflammation at onset of illness, hx elevated RF, dx with (was dx with SLE with No positive ANA )
Methotrexate, 2.5 mg (6 tabs 1x a week) , Plaqunil 600mg day, Lamictal (seizures) Topomax 200mg day (neuropathy), Vicodin (small dose prn) flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),
~nothing is impossible~