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Part II: It Still Might Be Lupus or Not...

Posted Jul 23 2013 12:00am
I have to apologize for taking so long to follow up with my last blog post. I took a bit of a hiatus from blogging (as I do from time to time) to focus on myself.

I'm thrilled to report that I'm the happiest and HEALTHIEST I've been in many years!  :)

Here are updates from my last post Part I: Um, So It Might Be Lupus...
* The skin biopsy results were inconclusive.  They showed inflammation and allergic reaction, but they didn't prove lupus.  However, they didn't disprove lupus.  Basically, I have two new scars on my arm for pretty much no good reason.  They go well with my muscle biopsy scar on the other arm.

* I love my neurologist. Period. She is one of the most supportive doctors I have encountered in my entire life (and I've encountered a LOT of doctors).  Based on my positive ANA, the skin rashes that appeared after extra sun exposure, and the achy finger joints, she agreed that my symptoms seem autoimmune.  She knew I was going to see a rheumatologist and told me that if my rheumatologist didn't want to put me on Plaquenil, she would just to see if it would help. 

* I saw my rheumatologist, and he agreed that my symptoms seemed autoimmune in nature and put me on Plaquenil.  I still do not meet enough criteria to get an official diagnosis of any particular diagnosis, but he strongly suspects that is the cause.  Though I don't have an official diagnosis, what I seem to have could be called "undifferentiated connective tissue disease."   He wants me to stay on Plaquenil for about six months before we decide whether or not it's helping me. 

* Interestingly, I've also seen a geneticist.  I was referred to her several months ago by my primary care practitioner because of all my seemingly unrelated symptoms.  The geneticist suspects something called Ehlers-Danlos Syndrome , a type of genetic (NOT autoimmune) connective tissue disease.  (Click on the hyperlink to learn more.)  Many people who have EDS were originally misdiagnosed with things like lupus, rheumatoid arthritis and/or fibromyalgia.  Hmmm...very interesting. 

In my next post, I'll go into more detail about these latest developments and explain why I think I've been feeling so healthy. 

Until next time!

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