Tuesday, July 23, 2013

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

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!

6 comments:

Hayley-Eszti Szucs said...

So happy to hear you are feeling the best you have in a long time. I look forward to reading your next post as to why. Long may it continue,
Take care, Hayley-Eszti

www.hayleyeszti.blogspot.com

alyson said...

Hi Hayley-Eszti - Thanks for the nice note! I wish you good health.

readyforwhat7 said...

Alyson! That is great news! You deserve to feel better and I am so happy for you. Question: have you noticed anything strange about your skin? Was it especially elastic or stretchy?

Also, could you please let us know what are your main symptoms/complaints? In your "About Me" section you talk about a general fatigue and difficulty climbing stairs. Anything else?

Please keep us updated on your progress!

alyson said...

Hi readyforwhat7 - Thanks! No, I haven't noticed my skin being particularly elastic or stretchy. My main skin-related symptoms are rashes and being slow to heal.

Excellent question about giving an update on my main symptoms and complaints. I should write a blog post with my latest health stuff. I still need to do my Part III regarding my latest health developments, but I will plan to do an overall health update soon.

Cameron Von St James said...

Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! –Cam

alyson said...

Hi Cam - I'm not sure if your comment is spam or a real inquiry. Feel free to post your question in the comments section. Thanks for visiting!