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Old 09-26-2012, 07:01 AM   #1
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Question So confused...

I'm so confused. I have had 4 positive ANA tests, by 2 different doctors, which my hemotologist states shows Lupus. I'm seeing her for critical anemia and have had 2 blood transfusions in 1 1/2 yrs. My blood count was down to 4.5. I had a hysterectomy at 29, 20 yrs ago, so I'm losing no blood. While in the hospital for the 1st round of transfusions, the drs. did an endoscopy and colonoscopy, which were normal. I'm a vegetarian and I'm on HEMAX rx for anemia daily. Just saw a rheumotologist, who ran the ANA dna strand tests and told me they were negative. Yet, I have the anemia for no reason, severe aches and pains thru-out body, mouth ulcers, sensitivity to sun (patches) but now told I don't have Lupus judging by strand tests. What makes the ANA positive 4 times? I don't have rheumotoid arthritis or sjogrens(sp?). No one can explain the anemia, basically, what makes 4 positive ANA tests? Thank u.

 
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Old 09-26-2012, 08:22 AM   #2
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Re: So confused.....

Hugs to you, I am going through some of the things you are. Positive ANA, severe aches and pains, muscle spasms, not enough markers for Lupus, but I do have the dreaded mouth sores and they hurt so bad!! I also have had yeast infection pretty bad at the same time as the yeast infection. I went to the health food store and got the probotics in the refrigerated section, 80 billion live cultures packed in that capsule. It helped with my mouth thinking thrush. This may be nothing related to what is happing to you. But, it never hurts to mention it.

Anyway, the rheumy is running test, I will see in a few days what comes out of them.
Here is what I took to them yesterday... I am hoping someone has a direction, the doctor seemed clueless and even thought it was caused my a virus?? Yeast???

• Extreme pain all day long in wrist, shoulder and elbow (rotary cuff pain, tennis elbow pain, and carpal tunnel) started July 2nd. Only thing that has helped was getting steroid shot. Last one was 8/31/2012 40 mg Kenalog
• Calves that felt like ice picks stabling them. It was almost daily until recently, now it is just 2 times or so a week. Lasting up to 72 hours then will stop a day, then start back up.
• Charlie horse cramps that range from calves, shins, thighs, under my breast, back.
• Joint pain & weakness especially in the morning
• I can no longer sleep on the right side of my body because of shoulder and elbow pain.
• I wake up in the middle of the night from hand , arm and foot tingling and numbness/asleep up to 5 times a night.
• 1st step out of bed, pain in my feet and calves.
• Getting canker sores in mouth about once a month, pretty severe.
• Getting yeast infections once per month. Difican not helping. Taking probotics.
• I get sharp pains shooting down my arm to my fingers.
• Hands are stiff and ache and I have no hand strength.
• I have tender spots all through out my body. Like I am bruised.

 
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Old 09-26-2012, 08:23 AM   #3
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Re: So confused.....

duplicated

Last edited by tam090; 09-26-2012 at 02:26 PM. Reason: duplicated

 
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Old 09-26-2012, 05:23 PM   #4
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Re: So confused.....

Quote:
Originally Posted by tam090 View Post
Hugs to you, I am going through some of the things you are. Positive ANA, severe aches and pains, muscle spasms, not enough markers for Lupus, but I do have the dreaded mouth sores and they hurt so bad!! I also have had yeast infection pretty bad at the same time as the yeast infection. I went to the health food store and got the probotics in the refrigerated section, 80 billion live cultures packed in that capsule. It helped with my mouth thinking thrush. This may be nothing related to what is happing to you. But, it never hurts to mention it.

Anyway, the rheumy is running test, I will see in a few days what comes out of them.
Here is what I took to them yesterday... I am hoping someone has a direction, the doctor seemed clueless and even thought it was caused my a virus?? Yeast???

• Extreme pain all day long in wrist, shoulder and elbow (rotary cuff pain, tennis elbow pain, and carpal tunnel) started July 2nd. Only thing that has helped was getting steroid shot. Last one was 8/31/2012 40 mg Kenalog
• Calves that felt like ice picks stabling them. It was almost daily until recently, now it is just 2 times or so a week. Lasting up to 72 hours then will stop a day, then start back up.
• Charlie horse cramps that range from calves, shins, thighs, under my breast, back.
• Joint pain & weakness especially in the morning
• I can no longer sleep on the right side of my body because of shoulder and elbow pain.
• I wake up in the middle of the night from hand , arm and foot tingling and numbness/asleep up to 5 times a night.
• 1st step out of bed, pain in my feet and calves.
• Getting canker sores in mouth about once a month, pretty severe.
• Getting yeast infections once per month. Difican not helping. Taking probotics.
• I get sharp pains shooting down my arm to my fingers.
• Hands are stiff and ache and I have no hand strength.
• I have tender spots all through out my body. Like I am bruised.

 
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Old 09-26-2012, 05:29 PM   #5
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Re: So confused.....

Just want to thank u for ur response. I understand. My 4 positive ANA showed Lupus, but the DNA stranded showed negative. Why do I have the symptoms? Where do I go from here. I wake during night in pain, have pain during day. I'm positive osteoporisis at 49. Depressing. I've never been a hypocondriac(sp?), this is all within 2 years. Mouth ulcers, I bleed at the corners of my mouth and was given a rx for Nystatin Cream for corners of my mouth only, nothing inside. Some nights, even when I take 2 Ambien, I don't sleep a wink. Never can take a nap either. I go back to my hemotologist in 2 weeks, I'll show her the negative strand tests and ask where we go from here.

 
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Old 09-26-2012, 08:16 PM   #6
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Re: So confused.....

According to your tests and symptoms, you do have lupus. Not everyone with lupus has positive DNA antibodies! That is no reason to say you don't have it. Anti DS DNA antibodies show up more in people with kidney involvement from their lupus. Your anemia is so severe, do you have hemolytic anemia? That is where antibodies to your red blood cells destroy them. You would have a positive Coombs antibody test. It is one type of anemia lupus patients can get. I would ask your hematologist about that. I hope you are on some treatment for your symptoms as well as the anemia. I can't believe a rheum told you you didn't have lupus just because your DNA tests were negative. I would find a different rheum personally.

 
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Old 09-27-2012, 12:51 PM   #7
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Re: So confused...

ANA tests can show positive for a variety of reasons other than an autoimmune condition, including having a cold or merely by being a relative of someone who has an AI condition. Age can be a factor as well. To confuse the matter further, a lab value may be positive but not considered positive by Drs. Generally speaking, the higher the titre the more likely it is that a Dr may suspect that an autoimmune process is occurring, in the presence of symptoms. The pattern of the test may or may not be significant as well. As to the DS antibody test, not being positive for it does not rule out lupus. Lupus itself has many other antibodies that may appear. Also there are over 100 different types of arthritises besides rheumatoid and lupus. I myself had those antibodies show up, but not in very high levels, but I do not have lupus. I do have an AI disease but not one of the ones I have mentioned. Confused? The Lupus board here is also a great source of info and you and tam090 both might want to check out their stickies. In a nutshell, diagnosing an autoimmune disease can be frustrating both for Dr and patient, especially in the early stages or a mild case. It can take time to sort through labs and symptoms. A good relationship with your Dr is very important as is not relying too much on Dr Internet. I always suggest writing down a few questions that are important to you to have answered, such as: what is your plan for me now? or what does this mean? is this a wait and see game and if so, how long do I wait and what should I be looking for? or whatever is important to you. Keep your questions to about 5 or less and don't keep them til the end of your visit. Don't bring a printout from the internet either. That information can be very unreliable or simply not applicable to you. It is important to establish a good relationship up front with your Dr while you are ruling things in or out. Having confidence in your Dr and your Dr having confidence in you as a patient is invaluable. I hope you find a cause and treatment for your anemia and wish you the best

 
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