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Old 04-27-2009, 06:11 PM   #1
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Nucleolar pattern

Does nucleolar pattern go with lupus or something else? If it goes with scleroderma, I don't have any of the symptoms at all for that. Why would it be nucleolar for the last 2 times?

Also would a nucleolar pattern rule out CFS? I'm told I have CFS and I'm told I have lupus. So confusing.

 
Old 04-28-2009, 09:02 AM   #2
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Re: Nucleolar pattern

Hi CindyLou,
A nucleolar pattern is usually seen in people with either scleroderma or CREST syndrome. I'm not sure why the ANA patterns changed that would be a great question to ask your doctor. Always keep in mind that in complex diseases, such as lupus, blood work does not mean everything and in some cases people are diagnosed with lupus with a negative ANA so it doesn't mean much of anything. I would say because of your symptoms and the findings of antibodies in your blood that is why you received the lupus diagnosis even though your recent patterns indicated scleroderma. Also, I'm not sure whether or not your doctor had fully explained the criteria to diagnose chronic fatigue syndrome to you. You must meet at least four of the eight primary signs and symptoms after you have had the extreme fatigue for more than six months. With CFS the bloodwork should be generally normal. As I"m sure you've been told lupus is difficult to diagnose due to the fact that it mimics many other diseases. With you bloodwork coming back abnormal and other symptoms of lupus the fatigue then becomes a symptom of lupus rather than a seperate condition. I hope this helped Have a great day!
-Erica

 
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Old 04-28-2009, 09:20 AM   #3
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Re: Nucleolar pattern

Hi Erica:

My rheumy doesn't know much about CFS and my CFS doctor--Dr. Bell who is world known and is famous for CFS had diagnosed me in 2003. I got sick in 1998 and from the onstart had the extreme fatigue so by the time Dr. Bell diagnosed me, I had the fatigue longer than 6 months.

Also Dr. Bell said the sed rate of 30 was abnormal. But I'm not going by that unless I do another one. He said it could of been high if it sat on the counter too long. He said CFS people have a flushing rash and he explained what that was. I don't have that. Mine is a permanent one and it started like that back in 1998.

CindyLou

 
Old 04-28-2009, 09:30 AM   #4
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Re: Nucleolar pattern

Hi CindyLou,
Are you still seeing your CFS doctor? If so has he mentioned if CFS ever presents in an overlap with other diseases or if he still feels it's CFS even though you have neutropenia, leukopenia, and positive ANA? As you said your CFS doctor is world reknowned and therefore your diagnosis is most likely a very reliable one. It makes me wonder if possibly CFS could overlap with the lupus? Or if he would want to retract the diagnosis of CFS due to the presentation of blood work that most definatly indicates auto immune disease which often presents with severe fatigue.
-Erica

 
Old 04-28-2009, 09:35 AM   #5
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Re: Nucleolar pattern

Hi Erica:

Dr. Bell and I e-mail back and forth. He retired as of a few months ago.

Dr. Bell said in some of his patients they do have a positive ANA and they do have a low white count.

He said if I have lupus, then I won't have CFS. CFS is only a syndrome. He said if my rheumy said I have lupus then I probably do. He said tests don't lie. But I told him my lupus tests are always positive.

He always said every 6 months to get CBC and sed rate done and that's what I do.

CindyLou

 
Old 04-28-2009, 09:42 AM   #6
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Re: Nucleolar pattern

Hi CindyLou,
Dr. Bell is right, tests don't lie, you're very lucky to have been treated by such a great doctor. Has your rheumy discussed any treatment options with you yet?
-Erica

 
Old 04-28-2009, 09:48 AM   #7
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Re: Nucleolar pattern

No treatment options yet.

By the way my C3 and C4 both went up from last year.

Last year my C3 was 92 and now it's 111
C4 was 17.50 and now is 19.10.

Does this mean anything?

CindyLou

 
Old 04-28-2009, 10:06 AM   #8
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Re: Nucleolar pattern

Hi CindyLou,
Increased or decreased complement levels will indicate to your doctor that your immune system is involved in your condition. Usually the C3 and C4 levels will rise when there is acute or chronic inflammation. The complement levels are usually the first to rise when testing for inflammation and the sed rate and CRP tend to increase later. Once the underlying condition, in your case lupus, is treated all the levels should go back down.
It concerns me that your doctor hasn't discussed any treatment options with you yet. Especially considering your neutropenia and leukopenia. If the lupus is treated that should all reverse itself and I'm wondering why you're doctor wouldn't want to do that.
-Erica

 
Old 04-28-2009, 10:16 AM   #9
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Re: Nucleolar pattern

I got to my rheumy once a year.

So because my C3 and C4 is higher than last year, does that mean anything? Or only if it goes out of range?

So I guess everything is fine with the C3 and C4?

CindyLou

 
Old 04-28-2009, 12:24 PM   #10
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Re: Nucleolar pattern

Hi CindyLou,
Yes, right now your levels of C3 and C4 are fine. However in my opinion I would say since they have risen they should be watched closely because it indicates that the inflammation is increasing over time.
-Erica

 
Old 04-28-2009, 12:28 PM   #11
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Re: Nucleolar pattern

Do you think that's why my sed rate was 30?

In January my crp was very good at only 0.04

What does the rise in the inflammation mean?

CindyLou

 
Old 04-28-2009, 12:40 PM   #12
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Re: Nucleolar pattern

I'm no doctor, but yes I would say that it is why your sed rate was high. Sed rate monitors inflammation, and yes it could've just been a goof but since your C3 and C4 are increasing I would say that it wasn't. If I were you I would have my sed rate retested just to confirm. Increased inflammation is usually found in people with chronic diseases. The rise in inflammation occurs when tissues are injured. In lupus those tissues are injured due to the overactive immune response.
-Erica

 
Old 04-28-2009, 12:55 PM   #13
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Re: Nucleolar pattern

How long should I wait before getting sed rate checked again?

I had the sed rate on this month on the 8th.

CindyLou

 
Old 04-28-2009, 12:58 PM   #14
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Re: Nucleolar pattern

If the sed rate is believed to just be a goof then the time you wait before having it retested won't matter. You could get it your next appointment or today, you don't have to wait.
-Erica

 
Old 04-28-2009, 12:59 PM   #15
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Re: Nucleolar pattern

I will schedule the sed rate again and see what happens.

Thanks.

CindyLou

 
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