I've sort of stepped back in my interactions with the chronic illness community in recent weeks because my primary diagnosis has changed. I feel like a fraud.
For about ten years I've believed that I've had something similar to Lupus and to save a lot of explaining I just said I did. I've been diagnosed with RA and UCTD (Undifferentiated Connective Tissue Disease) in the past.
At a visit with a rheumatologist I was recently told that my previous diagnoses were all incorrect. The doctor explained that my blood work should have more significant abnormalities by now if something was seriously wrong with me. Somehow my body just has a tendency towards unusually high white counts and a consistently high sed rate and other inflammatory markers but all that is meaningless.
So, according to him all I have is Fibromyalgia and he's never had a patient not get better who's actively done what they've been told. Well, I needed a topic change at this point so I asked him about my joints and was diagnosed with Elhers-Danlos Syndrome, hypermobility type aka type 3. According to him the EDS is a trivial thing with little if any bearing on my health.
Well, I won't be seeing that doctor ever again but he has done me a favor. Based on my research EDS isn't as trivial as he made it out to be and could very well explain a lot of my health problems.
Unfortunately, I'm the only one in my family with an EDS dx and my parents don't want to investigate the matter. Without a family history my GP won't do further testing to check me for the vascular type, type 4. That I have no family history of type 3 but still have that doesn't seem to change her mind.
I'm thrilled that I might have an answer to all the little problems. From the jaw that would lock and I've have to tug back into place from the time I was 8. To the hips that get all 'wrong' that I need help to fix so I can walk again.
That just makes it feel even worse that I've misrepresented myself all these years. No, I didn't do it on purpose. Yes, people do get new diagnoses on a regular basis. However, it doesn't seem like people are told they've been wrong for ten years all that often. It doesn't help that I didn't explain that I didn't have a firm Lupus diagnosis. I didn't even tend to add the ANA negative part all that often.
I could just slink away from all the friends I've made over the past ten years but I don't want to do that. I've meet really nice people who I can still relate to about being ill and all sorts of other things. I'm finally meeting people who are both sick and share some of my other interests like knitting, WoW, makeup, and having a dirty mind. I really don't want to start all over again. However, I do want to meet more people with EDS.
So, I'm 'fessing up. I don't have Lupus. If that doc is right, I don't have any type of auto-immune disorder. However, I'm not going to run away in shame for misrepresenting myself either. Mr. Wacky says that I haven't really misrepresented myself and that no one relates their diagnoses word for word but I'm having trouble believing him. (Plus, he's biased ;)
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