Finally Diagnosed.....but it wasn't lupus

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New Member

Date Joined Jan 2012
Total Posts : 14
   Posted 7/5/2012 8:49 PM (GMT -6)   
I have not been on here in a while (not that I was a lot anyhow). But mostly because I was in so much pain and seeing so many doctors. My mom and bf finally took me to the hospital and my mom went all "terms of endearment" on them. We were given a very patient young resident who tested me for EVERYTHING! From Lupus to Lymes, and asked that I switch doctors to a UC doctor. So we did, and I made an appointment with another resident who was already waiting on my test results when I had made the appointment. When I went in, we went over ALL of my symptoms, family history etc. He ran more tests and gave me some pain meds, that was visit one. Visit two was a month later, and there was another er visit in between (my new doctor called me the next day). At my second visit he had been able to gather all my medical records, and he along with his supervisor began asking about my flexibility. After completing a bunch of exercises they knew what I had. It was Ehlers Danlos Syndrome, a genetic disorder that will eventually disable me. There is no cure and treatment is only supportive, and we don't know which type I have yet. I just wanted to say to everyone not to give up, I was told that it is not uncommon to be misdiagnosed or thought to have something such as lupus or fibro and it really be EDS. Please stay strong and remember that there are doctors out there who care and will stop at nothing to get to the bottom of it.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/5/2012 9:14 PM (GMT -6)   
I just got finish reading about it. Wow! It sounds a little scary.

Do you know which type you have?
I hope it doesn't get too severe for you.

New Member

Date Joined Jan 2012
Total Posts : 14
   Posted 7/6/2012 5:24 PM (GMT -6)   
No I do not know which type yet, like all specialist I have wait for an appointment. Trying not to think too much about it until then, right now it is about managing pain until then.

Regular Member

Date Joined May 2012
Total Posts : 277
   Posted 7/7/2012 11:01 AM (GMT -6)   
Age, I am not saying that you do or do not have it, but I was told two months ago that I had Ehlers-Danlos. It sometimes seemed to fit, but other times did not. I went for a second opinion on that diagnosis in particular. I found out a couple things. First, you can have hypermobility (which is what I apparently have) without actually having ED. Also, there is a genetic test for most types of ED. Do you know if that test is done?

The reason I went for the second opinion is because my first rhumey told me that I had it, and I just had to accept it. He also told me that there were no tests to see if I had it (which was not true). My doctor today told me that if I had it, I would also have really stretchy skin, and although my skin stretches a little, it is nowhere near what skin in someone with ED has.What he said I had was Hypermobility. He told me that it can stand alone as a diagnosis separate from ED. The joint pain, fatigue and all that still go with it, but the blood vessels, heart and problems related to that do not. Do you think that is a possibility?
Trying to figure out what is going on with me.

New Member

Date Joined Apr 2016
Total Posts : 1
   Posted 4/5/2016 7:41 PM (GMT -6)   
I know I'm late to the discussion, but WOW, how inaccurate all of this information is. THE BIGGEST ERROR IS IN HOW MANY GENES HAVE BEEN DISCOVERED! Only 5% of the genes have been identified (estimated). As for the Lupus, studies have begun to show that close to half of SLE patients scored high on the Brighton Criteria standards. It was already known that SLE symptomology includes connective tissue disorders. Your Rhuemy is obviously not an EDS specialist because EDS-H is not super stretchy skin (it's only 1 symptom you may or may not have. It's common for the skin to be stretchier- 1.5 inch extension when pulled on forearm). Please see an actual EDS specialist. As my Rhuemy said, EDS can be suspected by a Rheumatoid Specialist, but diagnosed because it does not actually fall into their specialty. Also, hypothyroidism is often lumped into this cluster of disorders. Stick to scholarly articles and specialist when getting your information. FYI-I'm a biologist with all 3 disorders and I work with a team of doctors, including an EDS primary physician at MAYO. At least you can be assured my information is accurate and may get you to ask more questions.

New Member

Date Joined Apr 2016
Total Posts : 2
   Posted 4/13/2016 4:13 PM (GMT -6)   
PissedGirl, I found this posting while looking for answers about EDS. You seem knowledgable about this as well as being a biologist gives you a better perspective of the disease. Could you look at my post and let me know what you think as well as what I should do to get answers, what type of Specialist I should look for? I have been diagnosed with Hashimotos (2011) then lupus (2013). As with most autoimmune disease, in the beginning I was constantly misdiagnosed, told I had multiple disparate conditions or that it was mostly "in my head". Because of this I never feel confident in my current diagnosis. It was suggested to me by a GP at the beginning (2009/2010) of my symptom development that I might have EDS and would need to see a specialist to confirm. In the midst of working full time and seemingly going to Doctors full time I was was exhausted and forgot about the EDS possibility. I have a lot of the symptoms of EDS that overlap with lupus. My aNa test results are low for lupus. My symptoms include hyper mobility, arthritis, bursitis (there are cysts that come and go around my joints especially in my lower back and pelvis, Drs assume its bursitis), subluxations in almost all my joints, Raynauds, fibromyalgia, migraines, "brain fog", easy bruising, TMJ, photo sensitivity, a lot of gastro intestinal issues, decreased reflexes and I have the velvety skin and "cigarette paper" scarring but my skin isn't super elastic everywhere. Also lidocaine and most other anesthetics do not work on me. I have nearsightedness, glaucoma, astigmatism and strabismus but don't know if those are related.

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 4/13/2016 8:35 PM (GMT -6)   
This is a group of equals, no one is posting as a Dr or any other kind of medical professional. No medical opinions are offered here, only impressions and experiences of others suffering the same kinds of illnesses.

Therefore, Pissed Girl, I must ask you to keep your comments to YOUR PERSONAL EXPERIENCE as a patient. For legal reasons, as well as other reasons, the owner of this site expressly asks that we all leave our professional affiliations outside the door when we enter here.

DecagonWolf, I must make it clear -- any advice you receive here is strictly the personal experience of the poster and should NOT be treated as professional medical experience in any way, shape, or form.

Please adhere to these rules of the Healing Well website. Thanks!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Apr 2016
Total Posts : 2
   Posted 5/5/2016 8:03 PM (GMT -6)   
Hello Lynwood,

I am fully aware that what I receive here would not be professional medical advice. I only mentioned her experience with biology being helpful in understanding scientific details to higher degree than someone without it. In my experience it's often the experiences shared and advice of those suffering from chronic illness that can lead to proper diagnosis and better treatment options with my Doctors. That's why I am here. To learn and to share my experience with others in the hopes I can help as well.

All the Best
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