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Beth77
New Member


Date Joined Jan 2011
Total Posts : 3
   Posted 1/4/2011 4:46 PM (GMT -6)   
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.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/4/2011 9:10 PM (GMT -6)   
There are so many symptoms that are possible with lupus -- a neuro is good for testing MS, but I would suggest seeing a rheumy to check out the Lupus idea.

To find a rhuemy that is experienced with lupus, goto www.lupus.org and follow the links to your local chapter or the one closest to you -- then call them and ask which drs are active on their advisory board. (They will not recommend a specific dr, but the ones active on the board are the drs in the area who are interested in lupus and therefore know the most about it.

I hope things get better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Louisiania
New Member


Date Joined Nov 2009
Total Posts : 13
   Posted 1/20/2011 8:50 PM (GMT -6)   
Heya,
I'm only 17 but i was diagnosed with MCTD which is similar to Lupus two years ago, and have been in relapse consistantly. The only way you can really be sure is to be tested for everything, and stay strong say what you want when you want it, not in a nasty way but often if your not firm about things they can run away from you. The best advise i can offer isn't medical because let's face it... I'm no expert :P But emotional, you are very lucky to have your two angels looking after you and although i imagine it feels like your missing out on not only your lifes but theirs, you have to remember it's only temporary and plaster that smile on. Because you want your daughter to be able to say " Nah my mum had something but it never phased her" and the fact that your 33 is a blessing imagine being in your condition at 15. You've got to keep your chin up, I promise it'll get better.
Lots of Luck
Louise,
ps. let me know how it goes x
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