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Old 09-29-2003, 10:24 PM   #1
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Luvmypugs HB User
Unhappy 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 am going for bloodwork tomorrow to have the RA and ANA tests done and have been referred to a Pain Management center but can't get in until 10/16. I'm just very thankful that my OBGYN referred me to my new PCP who is absolutely wonderful and says we are going to get to the bottom of what's wrong with me.

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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Old 10-01-2003, 12:04 PM   #2
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I am no expert but have you had an endocronoligist check your thyroid levels. I went round about with my primary care doc for over a year it wasn't until I had enough and wen into a emergi care and they found a goiter on my neck meanwhile my PCP had been telling me his test showed no thyroid issue. I was leveled out okay for a while umtil things started going downhill again this summer and the Doc suggested that I had Lupus although I didn't test posistive. However this past Fri after a summer or light sensitivity exhasution, my hands hurt so band and were trembling like an addict, I found myself back in the ER this time with severe hypothyroidism. Hope this is helpful

 
Old 10-01-2003, 12:19 PM   #3
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Luvmypugs HB User
Unhappy

christyb, yes I have had my thyroid checked by my PCP also and all came back normal. I was diagnosed after my son was born with hypothyroidism and was on Synthroid for months and then suddenly my Dr. did a follow-up blood test and all was normal so they took me off of it. I have been off of it for probably about a year. My PCP is totally stumped at this point by my symptoms and why my sed rate continues to be high so he is sending me to a Rheumatologist, who, get this can't see me until March http://www.healthboards.com/ubb/rolleyes.gif. I told them I would either be dead or totally fine by then, just joking of course and they laughed.

I'm am just so darn frustrated with this whole thing and so so so tired of being sick and tired . Thanks for caring and thanks for sharing.

Take care
Melissa

 
Old 10-13-2003, 08:44 PM   #4
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lovemythreeguys2002 HB User
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I was diagnosed after my son was born with hypothyroidism and was on Synthroid for months and then suddenly my Dr. did a follow-up blood test and all was normal so they took me off of it.>>>

Hi, your tests were normal because you WERE on Synthroid, not becasue you don't need it.....all your symptoms sound like hypothyroidism and it sounds like you need to be back on meds again, I would find a new dr...good luck!
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Old 10-14-2003, 10:42 AM   #5
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
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Hello Melissa,

I do agree with lovemythreeguys in that if you had hypothyroidism and were taken off your medications then your thyroid could be responsible for some of your symptoms. The hair loss, fatigue etc can be from that. I am sure that you know the symptoms of hypothyroidism since you have had that before. Have you been tested for Hashimoto's thyroiditis? I read and re-read your post about the herniated disc and the endrometriosis. Those can cause such severe pain!!

My concern in this is that you have symptoms of migraine, and the pregnancy problems. Also, the gallbladder problems too. Why did you have it taken out? Did they tell ya? With the endometriosis, did they find any clots? Have you been tested for Antiphospholipid Syndrome (APS)? It is a blood clotting disorder that can reek major havok on the body. Sjogren's Syndrome can go with that too- so that is what rung a bell with me too. To test for Sjogren's syndrome there are blood tests, and there is also a "blot test" called a Shirmers test. All it involves is a piece of special paper to be put in the eye to measure the eye moisture. If it is dry- then you have Sjogrens. The blood test for Sjogrens is the Anti-Ro. The tests for APS are anticardiolipin and antiphospholipid antibodies. Once tested and if positive, you can be treated by thinning the blood out. Trust me, once your blood is thin you can feel so much better if this is what you have! The symptoms for APS can be migraine, weakness and tingling in extremeties, miscarriage and pregnancy problems, "brain fog", visual problems etc.

Another name for Antiphospholipid Syndrome is Hughes Syndrome, named after the doctor that found it. You can have Hughes Syndrome without having Lupus too. And if your blood work is negative, you can still have it! Very confusing I know, but if you are seeing a good Rheumatologist then they should figure it out I hope. If not, take those two blood tests to your doctor and see if you can be tested. A lot of your pain can be alleviated by thinning the blood out! I really hope this helps, please keep your chin up and things will come together. It is a "journey" to get diagnosed that is for sure. And your GP sounds good, at least he is trying. There are so many bad ones out there!! Take care

~Angelic

 
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