By Lin on Tuesday, November 07, 2000 - 07:27 pm:

ok, some of you know i have been posting alot recently, mostly asking for help. well i am pretty scared right now... i am seeing my doctor tommorow to get a referral to an orthopedic surgeon and a rheumatologist. i have all the symtoms of hypermobility, and have had them as far back as i can remember. i am now getting this taken care of because of diagnosis of chondromalacia patella a month ago. here is my help part, i need to know if it is possibly for me to have EDS, EDS scares me, compared to my more relaxed outlook at HMS. I have unstable, hypermobile joints. ALL of my joints are this way. I have soft stretchy skin, i have never been able to snap my fingers for what my mother said was my skin was too soft and moist. i have bad eyesight (read elsewhere in this forum eyesight was a symtom) of astigmatism. I think i bruise easily, they are not painful bruises, but even though i am a klutz (because of unstable joints) i often get bruises when i dont remember bumping myself there.I am 15, and in another topic it was mentioned menstual cycle as a symtom or something, mine is messed up always. low blood pressure is iffy, i have normal range at doctors, yet when i stand quickly, or get up after sitting for a while, i often get very lightheaded and nauseous for just a few seconds i will like sway for a few steps ffrom lightheadedness, then i am fine. I am scared about the thought of EDS, i am very athletic, and have many goals for a long active life, where as i am having trouble now, at only 15. i am eternaly thankful for any help! Lin

By Patrina on Tuesday, November 07, 2000 - 07:53 pm:

Dear Lin,

Even if you do have EDS, and I think that's not by any means clear (but certainly possible), it isn't the end. Not of the world, not of your life, not of good quality life for you, and not of your enjoyment of life.

Yeah, we discuss serious subjects here. Do remember, though, probably a lot of the more serious cases are the people who come online as we do.

And our lives aren't always so bad, but, hey, everybody's got to vent! This happens to be where a lot of people come to do that, to exchange info and make friends, and that's what the forum is here for. I guess I'm just saying, try to keep in perspective that whatever you find out from your doctors will be stuff you've been living with for quite a while.

Yes, your concern is serious, and it makes sense for you to be apprehensive. That's how humans get in this type of situation. Please don't feel 'guilty' (for lack of a better word) about your nervousness. On the other hand, remember that our imaginations can & usually do come up with worst-case scenarios that are worse than real life.

Whatever happens, whatever you find out (and they'll probably want to do some tests, and the results will take a while to come in), we're here for you, we're pulling for you, and we care.

I care, for what little that may be worth, and my prayers or positive energy or whatever you believe in go with you.

Hang in there & let us know how it goes. Take a list of questions, and ask follow-up questions if an answer isn't clear enough. You're obviously very intelligent. Don't let anyone bully you or try to treat you as a child when it comes to your health. You'll be glad later. Come to us with anything you're unsure about.

If you can't sleep, at least relax as much as you can; do some reading or whatever makes you feel more comfy!

More gentle hugs than you can count,

Patrina

By Patrina on Tuesday, November 07, 2000 - 07:56 pm:

Come cheer for Lin!

By Lin on Wednesday, November 08, 2000 - 05:11 pm:

i am calmed down some, but more worried in another aspect. see, i saw my doctor, and he refused to give a referral to a rheumatologist, he said it wasnt indicated that i need one since my sed rate is normal (i had a sed rate and an ANA to rule out lupus for another problem in my arm, that i feel is related to hms) but i am seeing an orthopedic surgeon, but my mother insisted i see the one that her boss goes to.. (he is a medical malpractice lawyer) and he specializes in sports related injuries... i feel like i am going around in circles here, not getting anywhere closer. i feel i have made a break through, that i finaly understand what is wrong with me, and then no, its denied. my mother doesnt feel eds is a possibilty or that HMS is real... so i have no support, i argued with my doctor for the referral, and that was a big step considering i am very shy in person, and usualy pretty compliant with others. but no referral... arg, i am tired of running in circles, i was seeing doctors and being tested all summer for what was wrong with my arm, and they still dont know whats wrong with it, i finaly feel as if a know, and now this!! i am a very active horseback rider, and love to run, thats what i am worried about, there is no way i can sacrifice those for hms problems, and i dont want to have terrible joint problems, go through surgeries, or end up ina wheelchair or soemthing. i already have many joint problems, that i just recently realized that its not normal to feel your bones slide in and out of place for no reason, i know that soudns stupid, but i never realized it was a big deal, it has happened all my life...

By Patrina on Wednesday, November 08, 2000 - 08:51 pm:

No, what you said at the end of your message doesn't sound stupid at all, and I'm *really, really, really* proud of you for standing your ground and arguing for the referral.

I hate to think you won't be able to push/make your own decisions on doctors until you're 18. That idea is intensely frustrating, and I can imagine you feel the same multiplied many times over!

The knee problem you've got *is* something that an orthopedist in sports medicine can deal with (the chondromalacia, that is). It's possible that they might want to do arthroscopic surgery, to sort of clean up the joint. This might be a good thing; of course it depends on the individual.

I've had that on my knee (twice) for the same condition. It's easy, pretty quick, & doesn't take long to recover from. They make a few very small incisions & use a tiny scope to see inside the knee & tiny instruments to remove any loose pieces of cartilage or bone. You may have a few of these as a result of the subluxations over the years. Getting them out makes your knee function more smoothly, & probably delays any further damage. You still want to see somebody who knows what they're doing about the HMS stuff, though. I would send by mail or drop off to the ortho., in advance, some info off the web about HMS & EDS, with a brief letter explaining your experiences/symptoms. This may give you an advantage when you go in for your appt., & the ortho. will have had some advance time to find out more about EDS if he/she isn't familiar with it.

You're definitely in a bind, here, because of your mother's opinions. But, maybe you can get somewhere through the orth. See if you can get a referral to a physiatrist (this is a physician who specializes in 'mechanical' problems like we have). They're also known as rehabilitation specialists.

I've run into a dead end with my rheumatologist; he's telling me now that all his specialty does is prescribe meds (I know that's not true of all of them, but I also know I'm not gonna change his mind). He mentioned seeing a physiatrist. When I had a follow-up appt. with my orthopedic oncologist (who removed the tumor in my knee, unrelated to HMS/EDS), I also asked her & she recommended the same.

Interestingly . . . I also asked my rheum. if there was anyone in the area who specializes in HMS/EDS, and he said no, he thinks the closest is in Boston! I live not far from Kansas City. I'd think there'd be someone at least in Chicago, or Houston, or Denver, or somewhere. I'm not sure he knows what he's talking about on this, & am going to research further, but it definitely goes to show how little a lot of docs know about what we have.

The only reason at this point that I'm continuing to see the rheum. is that he's experienced with fibromyalgia, which is one of several other things I also have.

Sheeesh (i.e. 'expletive deleted')!!!!!! Wish I could help you more.

By Gwen on Wednesday, November 08, 2000 - 11:45 pm:

Lin, I really feel for you. I can relate to the sensation of continually being given the runaround and not being listened to. As far as I'm concerened we are the only experts when it comes to knowing how we feel and what we experience. No one else can inhabit our bodies.
Stick to your guns and remember that there are thousands of other people in the world who have similar symptoms and many of us are intelligent professional people who, under other circumstances would be considered reliable witnesses. Why is it then that doctors are so reluctant to believe what we tell them we feel happening within our bodies. Why do they tell us that it can't happen when it obviously does and we know it does because we experience it. Could it be because they do not have the knowledge about our condition and are either unwilling to find out or reluctant to admit their ignorance?
As to what you wrote in an earlier posting, don't get too het up about the possibility of EDS rather than HMS. A lot of recent medical publications suggest that HMS is actually a form of Type III EDS. Have you read the article on the American EDS site entitled "The New Nosology" which gives a good overview of the different types of EDS? Only a few people end up crippled in wheelchairs, most seem to cope very well.
As you read through postings here you'll realise that most of us have had periods where things seem bad but have come through them, learnt our own strengths and been able to help others through our experiences.
I wish you well.

By Lynn on Thursday, November 09, 2000 - 01:51 pm:

Hi Lin! Everyone's giving you good advice- I hope you're feeling more at ease about EDS. I've already replied to you under Physical Therapy section, but I want to add that a good ortho can refer you to a PT who's knowledgable about EDS. If your ortho turns out to be a jerk, you'll need to ask somewhere else for a referral. Sports specialists may be your best bet- they know that you want to remain active! My daughter (Kir- 16) is a competitive swimmer and used to run and play soccer. She's dislocated and subluxed many joints (including surgery to shrink the ligaments in a shoulder). If you have a specific problem with a specific joint during your favorite activity (I think you said you ride?)- ask a PT to show you how to tape that joint for the duration of the activity. They even have tapes that stay on in the water (at least for several events). The muscles of a taped joint aren't going to strengthen from the exertion of the activity but neither will they stretch out! Strengthen those muscles during controlled physical therapy/exercise (without tape) until the joint is stable enough to do your activity without tape. Good luck and keep us all informed about how you're doing! Lynn

By Patty on Tuesday, November 14, 2000 - 06:34 pm:

Lin, I gather you are still in high school. Print out some of the information from some of the educational sites and take them to the SCHOOL NURSE. Tell her what you are feeling in your joints. See if you can enlist her help as she becomes more educated BY YOU. She might be willing to send a letter to your mom recommending you see a specialist and if she is willing to, she might even be able to do a little research and find who in your area would be knowlegable and recommend that specific doctor for you. My son did his homework and went to the health office with his printouts and, Bingo! He got some help.