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Struggling with slow diagnoses

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Posted 10/8/2015 5:31 PM (GMT 0)
I am fairly new to this site and could really use some feedback. I've been having medical problems for a few months and finally after countless doctors visits and always being passed of between departments one doctor mentioned lupus. He said it is possible and would make some sense. He even pointed out that some symptoms have been there for years. I did a bit of research and it matches quite a few symptoms. The biggest one was my body's inability to recover. I'm a collegiate distance runner and am used to running 50 or more miles a week. Right now I feel like I can't even run 2 miles a day and have had to stop working out. Some days are worse than others. I'll get awful muscle spasms, random sharp joint pain, hives, left flank pain, brain fog, pulmonary embolisms, and Reynauds phenomenon to the point of purple feet in 80 degree weather. It's been so frustrating and has been affecting every aspect of my life. My family has no history of lupus but they were also too poor to ever go to the doctor. I'm still waiting on test results but my igE came back as 144. This is in the normal range but he still flagged it as a bit high. Does anyone else have my symptoms? What should I be looking for? My pulmonologist and hematologist seem pretty set on autoimmune.
Posted 10/8/2015 9:25 PM (GMT 0)
Hi Runaround. I'm so sorry to hear you are going through all of this. It can be so frustrating. I am right there with you. I am not sure what igE is but I bet someone here does.

Have you had a positive ANA? That seems to be the starting point although I know sufferers can also have a negative ANA.

I hope you keep us updated on your progress
Posted 10/13/2015 2:46 PM (GMT 0)
Well I've gotten some test results back and I have low c4 levels. Also a protein S deficiency which isn't too surprising considering my embolisms. I was told I'm in the testing phase and they are just going to test and retest and retest and possibly send me to a lupus specialist. I had a negative ANA so I thought I'd be in the clear but doctors are worried about my c4 levels and with my symptoms I guess I may develop different ANA levels in a few years. I thought ANA was the more sure fire way to diagnose.....
Posted 10/13/2015 3:26 PM (GMT 0)
Nope, there is not a single diagnostic test that clearly says "Lupus". Instead most auto-immune diseases are diagnosed by a collection of symptoms.

For Lupus, generally diagnosis is made by having 4 of 11 symptoms, where ANA may or may not be one of them. Here is a relevant discussion. www.health.com/health/gallery/0,,20468402,00.html

Lupus is diagnosed by a rheumatologist... one way to make sure your rheumy is well-versed in Lupus is to find your local chapter of www.lupus.org and see what local Drs are active on their advisory board.

Often a Lupus diagnosis takes a long time and is partially a diagnosis of exclusion. It is more important that your symptoms are treated than it is to get a diagnosis.

Best wishes.
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