WENT TO RHEUMATOLOGIST

CindyLou · Tadpole Joined: 31 Jul 2005 Posts: 15

This is what he said. I have Mixed Connective Tissue Disorder. I have symptoms of Lupus but not full blown Lupus. I fall between the cracks. In Dec. or January I will go back for labwork.

Do any of you have that or did you first have it before Lupus?

CindyLou

skbird · Posted: Wed Aug 10, 2005 3:00 pm Post subject:

Wow, I didn't even get that. I got "well, your labs don't show anything and ANAs don't mean much. You are not having a lupus flare..."

I have read that some people get diagnosed with MCTD and it may or may not later turn out to be lupus. Also UCTD (undifferentiated) which sounds like another non-specific diagnosis. But if nothing else, it is an acknowlegement that something is going on.

I'm prone to minor bouts of bad attitude right now, I guess just because the last few months have been emotional, so when I get a sudden chest pain like I have been for the past few months I think to myself, must not be anything, because there's nothing wrong, according to my rheumatologist. Sigh.

Seems like January is a long ways off for more tests. I'm supposed to go back in to my rheumy in early November to re-do the C3 test - it was just below normal when I got it done last month. I wonder why your doc is having you wait that long?

Take care Smile

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Stephanie

CindyLou · Tadpole Joined: 31 Jul 2005 Posts: 15

Hi Stephanie:

I guess probably why my Rheumy said to come back in Dec. is because my symptoms are mild and when I had the Lupus tests done last time they all showed normal.

But since I basically always stay the same, I'm guessing that's why he told me to come in December.

CindyLou

hatlady · Tiger Joined: 16 Oct 2004 Posts: 810 Location: Illinois

The good news is that he did LISTEN and sounds like he's going to continue monitoring.

Hope the symptoms lessen and that it will be OK!

skbird · Posted: Fri Aug 12, 2005 9:13 am Post subject:

That's a good point, Hatlady. I've read enough times on the web that you have to be patient with this process and I think that's completely right. Since neither of us got written off (meaning, there's nothing wrong at all, don't make another appointment) then at least they think something is worth keeping an eye on.

Feeling like my own bouts of bad attitude are going away now that I am feeling more productive.

Take care!
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Stephanie

hippimom2 · Kitten Joined: 15 Jul 2005 Posts: 143 Location: Iowa

CindyLou, I completely relate to what you are going through and how frustrating it can be. When I initially saw my first rheumy, I had a positive ANA and a lot of pain, fatigue, and weakness. I got the same response as skbird. Even when new symptoms started developing this rheumy didn't seem to want to hear about it and brushed me off. I knew there was something going on, so over the next few months I went to a really good PA who listened and was able to document new symptoms that came along such as mouth ulcers, rash, elevated sed rate, protien in urine, fevers, and swelling in joints. I then went to a new rhuematologist who at least is taking things seriously. I guess there must be a lot of doctors who are hesitant to diagnose lupus. My current rheumy is treating me for lupus without the diagnosis. On the one hand I know that a lupus diagnosis can negatively affect things like medical and life insurance, but on the other hand a diagnosis also validates that you are actually ill and have a disease.

I have read a lot about lupus and everything I have read indicates that it can take years to get a diagnosis and can be a slow progressing disease. My advice is to find a doctor you really trust and who will listen to you and take you seriously. Take care and hang in there.