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Old 09-29-2003, 11:30 PM   #1
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Question Negative RA and ANA tests...now what??

Hi everyone, I am new to the boards and just want to let you all know that I sincerely feel for all of you in pain. I was perfectly fine up until about 3 1/2 years ago. I weighed 115lbs., walked 3 miles every night and the worst thing that ever went wrong physically was a headache occasionally. Then.......

I started having terrible periods and terrible pain in my left ovary. Turns out, I had Endometriosis very bad and had to have surgery. Well, that doctor was a regular OBGYN and I was worse when he got done with me, so 9 months later I had to have the surgery again by a specialist and it was back with a vengeance and I had a golfball size tumor behind my left ovary. But, this doctor was wonderful and he fixed me right up.

Then, one day at work, I was a Graphic Designer, now a stay-at-home Mom, my lower back was hurting so bad I could hardly walk and as the day progressed, it got worse and worse. By evening, I was in tears and when I went to sit on the couch, my whole body collapsed and I could not get up. Thank God our pharmacist is our good friend and he brought me some meds to get me through until I could get into the doctor's office the next morning. Well, an MRI was scheduled and a herniated disk was found.

Then I got pregnant in November of 2000, after 7 years of trying. Had a c-section in March 2001 and delivered a little girl who was brought into this world early because she had a rare disease known as Potters Syndrome and died shortly after birth. I thought my life was over.

I got pregnant again the end of April 2001 and delivered the most precious baby boy in January 2002, but not without complications. Three months of Progesterone shots in the hips, which my husband had to administer every night (poor thing). Carpal tunnel surgery at 3 months pregnant. Emergency Gallbladder surgery at 6 months pregnant.

I have since had 2 rounds, 3 sessions each, of epidural spinal blocks for the disk. They are no longer working. I have tried cortisone shots, they are no longer working. I have Restless Leg Syndrome very bad, every night of my life. Have tried everything from herbal, to Parkinson drugs to Tonic water with Quinine, nothing but Hydrocodone works.

I also have migraine headaches but not as frequently lately, thank goodness. I can't take Zomig, Imitrex, Maxalt, none of these work. The Maxalt that orally dissolves under the tongue works fairly well if chased with Hydrocodone and I lie in a dark quiet room and rest for a few hours, but that's not easy with a 20 month old .

And now, my PCP thinks I may have Sjogren's Syndrome. My sed rate has been elevated to 50 (normal is 0-20), my iron levels are extremely low. My hair is falling out. My face continues to break out in red pimply rashes, almost like blisters, I ache all over, I am tired all the time and have no drive to go or do anything. My sleep cycle is totally messed up, or should I say, I just can't sleep well anymore. I don't even want to talk on the phone. The only thing that makes me feel even half way decent enough to function is Hydrocodone. I am now taking 7.5/500 and take 2-3 every 4-6 hours, along with Advil occasionally. I'm just very thankful that my OBGYN referred me to my new PCP who is absolutely wonderful. Now though, that these tests have come back negative, he says he is puzzled and would like me to see a Rheumatologist because my sed rate continues to be high.

I have been trying to gather all the information I can on all the symptoms I have to try and come up with some sort of solution as to what's wrong with me. I used to be such an outgoing, energetic person, now I'm not, and I want so much to be again. Because at 34, this stinks!!!

I know this post is extremely long and I apologize but I guess I needed to really talk about all this and see if anyone had any input for me, be in good or bad I sure would appreciate it so much.

Take care
Melissa

 
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