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Hello,

A little of my history. I got sick and was hospitalized 2 years ago. All of my blood counts were abnormally low and I've always been normal. I developed Trigeminal Neuralgia at the same time. Had bone marrow biopsies, spinal taps and numerous other tests. I had my spleen removed (it was enlarged) a few months later. They suspected hairy cell leukemia, those tests from the biopsy of my spleen came back negative. After 2 years I still have low blood counts (white and red) and now I'm starting to have some tachycardia and shortness of breath. I've started on heart meds this week to slow my heart down some. My cardiologists suspects lupas but the rhuema. I saw said my ANA was negative therefore I didn't have Lupas. My Hematologist/Oncologist is sending me to another specialist in hopes for a diagnosis. I also have the joint pain and swelling and fatigue. Every 5 weeks or so I develop mouth ulcers and run a fever. I'm praying for some answers and I really can't continue like this. Has anyone out there experienced the same frustration of getting a diagnosis ? I'm starting to feel like I'm going crazy.
 

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Coleman,

Welcome to the Lupus Site. Oh my what a journey you have already been on. I wish I could tell you I have never heard something like what you have been through before but here on this site you are not unique. I hope that gives you a little relief. It is very rare to have ana negative lupus. Less than 3% I believe. When it is negative with Lupus it usually falls into a few categories like long term prednisone use for another health issue. Chemotherapy treatments for Cancer. There are also times the ana will be negative but some of the other tests on the "lupus" panel come back positive. Most of the time the lab won't run the "ena" panel without a positive ana, so a doctor would need to write the orders such that all the tests are run regardless.

Another factor can be simply that the lupus was developing and when the Rheumatologist ran the blood tests it was negative and could now test positive. I don't know if you have had the lupus panel run multiple times or not. Your hematologist could run all the blood tests ahead of your appointment with another Rheumatologist. Try and see if you can research who the lupus specialists are in your area and then get referred to one of them. Only 20% of all Rheumatologists diagnose 80% of all lupus cases in the USA and the numbers are likely similar in other countries.

I do have a positive ana but that is pretty much it. I have an overlap condition of Lupus with Scleroderma and RA. If I went to the local rheumy I would still be begging for treatment. I drive into the closest large city to see a lupus specialist and it is worth every minute of the drive.

Have you looked over the list of lupus criteria and symptoms posted at the top of this forum? There is also a post with the blood tests used, it may be in the tests and procedures forum if it is not in this one.

Let us know how you get on.

Take care,
Karen
 

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Hi Coleman, and welcome, you are at a great site. I, as
far as I know, have never had a positive ANA, and that didn't seem to bother my Rheumy as he said that there are just some of "those" people that never test positive, but yet it is certain that it is lupus. But, the road to get the final dxis a long one, and does ,at times, get very irritating.
You Rheumy is going to dx you not by tests alone, but by symptoms also, and by observing you. Stick around this site, we are here to support you. Be well.:wink2:
 

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Dear Coleman, My bloods were negative for a very, very long time but there was no doubt about diagnosis. The Consultant started treating me before the bloods turned positive. You may ed another opinion if you feel Lupus fits your symptoms.
x Lola
 
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