I have never posted, but I have found many of the information on your group page helpful.
I have not been diagnosed Ehler-Danlos Syndrome officially, but both my GP and Rheumatologist believe that I have it (ruled out lupus & rheumatoid arthritis). I have an appointment with a connective tissue specialist, but it is not until August.
I was wondering if any of you have issues with fragile veins. The other day I was walking and had shooting pain in left knee cap. I looked down and it had a swollen quarter sized lump on my knee cap (picture attached). It was warm to touch and it hurt to bend my knee too much. I thought it could have been an allergic reaction, but neighbor thought it was a blood vessel/vein that might have ruptured/popped (don’t know what the proper terminology is). The next day the whole knee cap area was bruised (lump had gone down). This happened Friday afternoon and I still have bruise today (Tuesday morning). I do bruise easily and have them on my legs most of the time, but this time I didn’t hit it at all and I have never had it swell this way.
I was just curious if this is related to Ehler-Danlos, maybe medication (started 750mg Nabumeton 2 weeks ago & it’s been helping), or something else. I wasn’t sure if it was anything serious or if I should be on the lookout for anything else that might be more serious. The only other time I have had a vein “break” like this before was 2 weeks prior when I accidently weed whacked the top of my left foot . Thankfully I don’t have a very good weed whacker and it left mostly welts and didn’t break much skin, but it did leave a large swollen area where the blood dispersed.
I will probably call GP, but I also wanted to ask everyone’s thoughts here since my doctor is not as familiar with the Ehler-Danlos.
Hi...there r several types of EDS...on is vascular...and could explain the issue u had with ur vein.....the slow healing and easy to bruise is a tell tale sign of EDS that many seem to have.
I am not sure where u live, but there r specialists out there that can help. A good Rheumatoid dr should be able to dx u, a geneticist can tell u what type u have.....
There is a good EDS dr in Baltimore, MD...if u r able to travel there....that is the only one I am familiar with at this time....I hope others add info as to who they see so we can get a Drs list going for EDS !!
I did go a Rheumatologist a month or so ago, but she seemed more focused on disproving lupus than helping educate me on EDS or any other potential conditions.
The good news is I am close to Baltimore and made an appointment with Dr. Framcomano after I started reading the positive posts about her from this group (I assume that’s who you are referencing). I have 3 months until my appointment, but I am happy that I will be able to see someone who will know some answers. Until than I am trying to manage pain and other issues with help from GP.
Yes...it is Dr Fracamano....I am so glad u r close enuff to go!!...I hope to get there one day soon : )
And for the rheumatoid Dr...mine was trying to prove or disprove lupus when they found I had chiari and then dropped me as a patient bcuz chiari is a neuro issue....too bad they did not check me further to see I also had EDS which is a rheumatoid issue...it is all egos that get in the way with most of them.....and then u have a few really good ones....and I would rather go to them then go back to a dr that would drop a patient so quickly....it is sad.
Good luck and do let me know how ur visit in Baltimore goes : )
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