By Lin on Monday, January 15, 2001 - 08:12 pm:

ok, most of you probably are familiar with me by now, i post lots =) ok, i was diagnosed with chondromalacia patella in the ER, when researching that i figured out i had hypermobility syndrome, wow, i am not alone, i was so happy, figured i prob had eds as well, so did much research on that. saw an orthopedic surgeon who diagnosed my hms. spoke to him today about seeing a rheumatologist (my gp refuses to refer me) about ethlers danlos syndrome. he says i dont have it because i dont have skin involvment. i do though. i said i had the stretchy skin, etc. he pulled the skin lightly on my forearm, and said it wasnt stretchy. he says to speak to my gp about a refer to a genetist. is this what i need to do? for the basic symptoms that are listed for ethlers, not counting many other things i can attribute to it, my main problems are joints popping out all of the place, subluxations and the sensation of joints popping out all of the place, feeling them slide like crazy from simple movemets. all the double jointedness is me, i have pale, thin skin, my veins are extremely visable underneath my arm, no EDS people to compare to but on my knees and elbows my skin is far stretchier (is that a word?) than friends, i bruise easily and it takes forever to heal, i have many scars from simple incidents, and deep purple stretch marks across my hips. i am 15 years old. I am pretty positive this is EDS and i need to get it checked out, and since their is no expert besides dr. Grahame, and i am in the US, the next best experts are you guys, experts by first hand experience. My mom wont help me, she doesnt believe me, automaticaly believes the doctor, and refuses to spend time reading up on EDS with me. So.... by your expert opinion, do i need to get this checked out? I am pretty sure this is EDS, pretty darn sure, but always open to suggestions. thanks, and sorry if this was realy long! Lin

By Shawn on Sunday, June 10, 2001 - 12:25 pm:

Be patient with your docs and mom. I was sure I had fibrmyalgia or under-treated hypothyroid for several years. I saw Drs for carpal tunnel, then tarsal tunnel, neurologists, orthopaedics and drove my Dr crazy. Finally, I was diagnosed with HMS by a rheumatologist. Others will never understand your symptoms nor will they care since they don't live with it everyday, but if you keep complaining someone will eventually find out what is the source of your medical problems too. It may take years...be patient..

By Sharon on Thursday, June 14, 2001 - 06:10 pm:

Like you both, i get sick of doctors not beleiving that you suffer from the symptoms that you do, I am 30 now and recently (like 1 month ago) diagnosed with a heritaty collegen disord, but not which one, so i am going to see a genetisist)but when I was young about 12 I had problems with my hips etc and spent a long time in hospital etc and since recently gaining access to my medical files, I find that they thought that i was faking it as the symptoms that i had were not usual in someone my age. It turned out to be Perthes disease and Juvinille Rheumatoid Athritis (I guess I made those up)?. My doctors still seem to think that i am making more out of my pain and symptoms that I really am suffering as someone who is 30 shoulde suffer problems like these. To make things worse i also have HLA B27+ which is a tissue type you are born with which can make you more likely to get certain forms of arthrius etc and as was explained to me makes you an achey person and i also have Reflex Sympathetic Dystrophy a sympathetic nerve problem from 2 injuries which is a chronic pain problem that can be debilitating, but when I see the doc's they never look at the big picture that is me, they just treat the symptom that i am there for that day.
I am truly sick of being thought of as either a faker or a group on individual unrealed symptoms, chances are that all or a lot of these symptoms are related to one of the 3 conditions that i suffer from. Upon recently seeing a new Rheumatologist to try to get help for constant recurring dislocagtions and subluxations all he said was that my shoulder injury needed to be fixed and then i needed to exercise and i would get better at the same time he told me i have a heriditary collegen disorder and refused to make a diagnosis of which one! am I crazy but that is what I went to see him for?
Anyway thanx for letting me vent I am just so sick of Doctors who don't listen or just look at the individual symptom and never look to see if there could be an underlying problem

By Mickey on Friday, June 15, 2001 - 03:23 am:

Hi Sharon,

Like yourself I suffer from RSD, I say suffer because you really do suffer badly with this. My rheumo doc has referred me to a pain specialist to have nerve blocks done to try to bring the pain under control and and a neurologist!! So it must be real. I recently saw Prof. Grahame who informed me that RSD frequently occurs in patients with HMS!! Astounding!! I never knew this and had blamed me having RSD on recent surgery for Chondramalasia Patella (another problem caused by HMS).
I know that this doen't give any practical help but I hope that reading this shows that you are not alone. Have you looked for a RSD support group? I have found one on the net and it really helps me, there I have found others who understand exactly what I feel and we help each other through the bad times and celebrate the good times. Currently there are two of us who both have RSD and HMS, so you would be in good company. Let me know if this sounds interesting to you. The only problem is that the group is based in the states and so the chat room is open in the early hours of the morning for me!! Still on the nights that I cant sleep I find this really useful, as its often then that you feel the most lonely.
Take care, Mickey