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 : )
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.