Hi...I am new and have not been diagnosed but the word Lupus has come out in conversation and I have done some reading on it.A little bit about me, 33 year old single mom of 1 beautiful angel :) enganged to an angel for dealing with me.
Basically back in May I started with a headache that then lead to unexplained fevers, chest pains and was rushed to the hospital with blood pressure being 186/124, they thought I was having a stroke. Other symptoms I was having was a rash on my chest that was almost clear inside with a ring like outside (hard to explain), not itchy, more of an eye sore, body temp dropped to 97, I was having days that I could not walk, or even get out of bed, sharp pain in my hip through my leg. My feet go numb, or would get pins and needles. They tested me for Lyme disease, EEE, West Nile because I had been in the woods and had also been bitten by a mosquito. Negative results...Headache continued for a few more weeks.
I Went back to e.r. with chest pains again, still had a headache, and my blood pressure again was 182/130, retested for Lyme...doctors insisted it had to be it. Negative. The pain in my hip has worsened to the point that I would stand up and collapse so I was no longer able to work. I was now having forgetfulness where it was scary, I would get into my car and forget I was driving. Confusion, trouble speaking or finding what I wanted to say which frustrated me because I felt dumb. I felt like I had a flu, the heavyness on my body, vomiting...just overall like a flu.
Followed up with primary. He stated he was baffled. He sent me for blood work after blood work, week after week, mri after mri. In total 5 negative Lyme disease tests. I then was referred to a neurologist who sent me for a brain Mri. Didnt find anything "to be too concerned about" whatever that might mean. He them sent me for an EEG, which came back with results. So I had to do a 48 hour at home EEG. Those results were that I am having 4-6 seizures in my brain (that are not felt throughout my body) This was only a month ago. He put me on medication to help control the seizures that should help my headaches and help everything else. However, its not helping. Im so frustrated, I need relief. I cannot walk, I am in so much pain in my hip, my head is hurting so bad I cry at night and honestly I am even scared to close my eyes.
Has anyone had these types of symptoms and had negative results for Lupus? I got tested once for lupus, I think...I cannot even be positive I was tested. The neurologist I was referred to mentioned Lupus and M.S. so I am assuming they tested me for those.
Should I push to see a Rheumatologist? my primary care is still baffled and is taking any advice that I give him cause he wants what is best for me.
I appreciate any and all help
Oh and everything written was from my notes, my confusion and forgetfulness has gone downhill so bad that I have to write everything down. I do not feel like myself anymore.