By Lin on Wednesday, December 27, 2000 - 01:37 pm:

I was wondering if anyone had this problem... this isnt realy a problem i guess.... but... ok, well i was talking to some doctors online, i am pretty sure they were real becuase they knew their stuff. a chiropractor started preaching to me that i should never correct my own subluxations, i need to go right to a chiro, and to see a chiro to get aligned, forget my regular doctor and orthopedic surgeon and rheumatologist and everyone else. he said he treats HMS and EDS patients all the time, but i was of course skeptical. I was then talking to another doctor who told me he doesnt know about those 'new' disorders, meaning HMS and EDS, i was confused, according to research HMS and EDS are NOT new.... he then told me he believes they are new and doesnt believe they even actualy exist! i am used to doctors not being familiar with HMS and EDS, but never spoke to people like this... just curious if anyone else has had any similar experiances? maybe that is why is is usualy not diagnosed correctly, or when symtoms first occur..
Lin

By Elle Elàn on Thursday, December 28, 2000 - 11:29 am:

I don't know Lin,the first one you describe sounds like a imposter to put it mildly.If he really treats hms and eds patients all the time he should know that it is not possible to run to a chiropractor every time something slips! Don't believe everything you hear/read! Maybe just maybe he's a chiropractor but that doesn't say anything about his medical education I'm afraid.
I once had one that didn't make it as a familiedokter so he did a course with some unknown person who claimed "she had all the answers to physical problems since they were all related to the backspine".He called himself a "orthomanipulator"' So yes: he knew something about the human body and yes:he had papers but yes: he was a complete quack.He cost my parents a bundle,kept putting the same vertabrae into place,told me I was never alowed to look over my shoulder ever again,told me my neck was hopeless (I have/had an eaglesneck)and I shoudn't try to straighten it for my vertabrae just were in that position and my neck could only be straightened by surgery.Well, my vertabrae kept slipping out of position,My neck just started cracking more and two years ago a pt told me (and he proved to be right) that I could walk with a straight neck if I wanted to Wish I had met HIM 20 years ago!.So be carefull with what you believe;especialy on the internet.About the second guy/gal; There are a lot of doctors and even specialists out there who really don't know about hms and eds.Some of them have even lost their interest in their profession or think that "they are the scolered ones and the patient shouldn't , simply can't know better then the doctor.After all: THEY studied for years to get their degree! If we claim to have a pain or disorder THEY don't know about then WE must be wrong or at least posing".Well:cow's doodies!Nonsens!You know what you feel and you know what you are diagnosed with and if that is consistent with your own findings! Thank god there are doctors and therapists out there who do listen to their patients and are interested in them and their own proffession!So I guess I am not saying you shouldn't trust doctors at all but just be carefull who you trust!

By Gwen on Thursday, December 28, 2000 - 01:31 pm:

What a marvellour expression-"cow's doodies" must add that to my list of expletives. I think what you say is totally correct Elle Elan. It's not only doctors on the internet but also in real life. I have found that well qualified and respected specialists don't know or won't find out about EDS/HMS. Instead they want to relate whatever ails me to their own particular field of expertise. I was diagnosed as having HMS ten years ago and since then have had another rheumatologist and my physio agree that I have the symptoms of HMS. Alternatively I have been told it is because I don't breathe correctly (by a musculo-skeletal specialist) and that it's just old age (Hell, I'm only 54 and supple as!)and joints stiffen (!!!!!!!) as one gets older. Despite negative blood tests I've also been told it's arthritis but I have no sign of arthritic changes except in a foot that was crushed.
What really gets fair up my nose is when I say I am experiencing a particular symptom, such as my sterno-clavicular joints cracking annd being told , "Oh no, that can't happen" Well sorry mate I know what I am experiencing. I may not know why these things are happening but I do know what I feel and that I never used to feel them. Why can't doctors accept that we aren't a pack of retards and as far as knowing what we feel we are the only experts. No-one else can experience what is happening to our bodies.

By Lin on Thursday, December 28, 2000 - 07:26 pm:

oh yes i know that, i had quite a long conversation with the chiro in a health chat room on yahoo that i frequent, it is very helpful alot of the time, and everyone got angry at me for questioning the doc! he had lots of pages online he told me too read about chiros, and that only a chiro is allowed to correct a subluxation, i need to stop manipulating myself, its too dangerous, etc. um, i can NOT run to the chiro every hour or so. i went to my schools nurse once because i has subluxed a bone in my wrist during band that i popped back in and jammed my entire wrist while relocating everything, (she knows me and my problems well by now, i frequent her office for my pain and anti inflammatories daily, plus ice or warm packs when i screw up myself, thank goodness i dont have gym...) and she jsut stared at me and wanted to call my mother to take me to the ER! she has no idea what to do when i hurt myself, and that is pretty often.. my orthopedic surgeon even didnt believe me when i complained of dislocations and subluxations, and he was the one that diagnosed me HMS! i am trying to get a referral to a rheumatologist from him, as many may know that i have mentioned my gp refused to refer me. i have learned not to believe everything i hear and read. just wondering if anyone else had experienced all that! we realy need to do soemthing about this!
Lin

By Johanna on Saturday, December 30, 2000 - 09:05 am:

Read some things I must respond to.
First. I was also told not to realign myself because it would destroy my ligaments even more. I should instead relax, sit or lie down and wait for the joint to pop back themselves. This hardly ever happens spontaneously, so usulally against advice I do strech and manipulate to realign. I really believe it is actually making the hypermpobility worse, but hey, the joint has to get back in place one way or another. And I still haven't found the other way.
Second. Most doctors don't know (much) about HME/EDS. A few weeks ago at a friends house I got hold of the books med.students use all over the world. The chapter on connective tissue was very disapointing. They mentioned Marfan's, OI and EDS. Of HMS there was no mention. What they said about EDS was not very much, it pretty much came down to this: Connective tissue disorder, different types possible varying from no skin-involvement and extreme hypermobility to no hypermobility and extremely elasticity of the skin. Cure: none
(the 'no skin-involvement' puzzles me since I always thought that that was the difference between HMS and EDS)
The Beightonscore was mentioned to use as a scale for the hypermobility. Since HMS wasn't mentioned in the book, the Brightoncriteria weren't given. Perhaps the editors of this book don't believe in HMS, perhaps they think it is EDS former type 3 (as they speak of the possibility of no skin involvement) Their knowledge on the subject is poor, eitherway. That is sad because we are talking about teaching materials for our future doctors.
Third. Yes Lin, someone else has experienced all that, in fact, most of us have or still are experiencing it every day. And yes, we really need to do something about this. The only way I could think of to do this is to start patientgroups that offer support from patient to patient (like on this board) and try as a group to make HMS/EDS visible, try to grasp the attention of the medical world. I don't know if there is a patientgroup were you live. If so, join it, if not, you might want to start one. That is hard, with a few Dutch patients we have started a group, HMS Nederland, last April, we are still burried in formalities and forms and institutions trying to get an official status, so that we can have a voice, but the support part is allready functioning very well. It is a lot of hard work and I don't advise you to do it on your own but then again you don't have to, because you are not on your own, just read this board. Okay, perhaps I am getting a bit (much) carried away. I don't suppose everyone has the time or the energy to take on such a project, neither would have I, if it wouldn't have been for the other girls that are in this with me, we keep eachother going, there is no way I could have done this myself. Like I said, I am getting carried away now by my fighting spirit, but my point is this: Not a single soul is going to change this situation where doctors are not aware of HMS/EDS if it isn't us. The doctors have the ability to study the genetic aspects, they have the knowledge of our bodies to know what is going on, they are the medical experts but they need someone to tell them HMS/EDS is worth looking at and doing research on. And that someone has to be us. We need to speak up and draw their attention to the subject. We shouldn't have to, we especially have much better things to spend our energy on, but in the present situation we do have to. To them HMS/EDS is just one of many disorders and diseases, and not a very rewarding one to look into because it is neither lifethreathening not curable. To us it is something that is present every minute of our lives.
For starting small: on the internet are some very good articles on HMS/EDS by prof. R. Grahame. You could try to get your doctors to read them. Here are two, there are more.
Joint hypermobility and genetic collagen disorders: are they related at Archives of Diseases in Childhood.
Pain and Hypermobility at the HMSA-site.