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Old 05-24-2003, 11:21 AM   #1
ShaBaby
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Exclamation Teen w/TMJ & multiple skeletal deformities

Anyone have the multiple skeletal deformities, multiple skinal deformities, etc. that sometimes go along with TMJ???? Some rare disorders I've found. Maybe my daughter has one. Anyone heard of these problems?

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ShaBaby

 
Old 05-24-2003, 08:17 PM   #2
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Hi Shababy,
I am wondering what types of disorders you are referring to. I'm 39 and for the past 9 years, I've been struggling with awful spinal/joint/ligment pain.
It seems my ligaments are not completely normal - don't seem to have the integrity/strenth they should, and therefore the joints suffer. One of my doctors suspects I do have a rare connective tissue disorder called Ehler's Danlos Syndrome - type III. It's also referred to as "hypermobility syndrome". The problems were mostly in my spine to start...but now have expanded to my shoulder/neck and jaw...also my knees to some degree.
Let me know what you were thinking with regard to your daughter.
Be well, Robyn

 
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Old 05-25-2003, 07:31 AM   #3
ShaBaby
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Have you had MRI's of your spine and brain, entire body scans, xrays of your joints, spine, etc? That's how we found out that Sam has mild Scoliosis, Spina Bifida OCCULTA, spondyliosthesis(slip disk and not sure if I spelled that word right), TMJ(jaw disorder, one jaw smaller didn't grow as much as the other), one leg shorter than the other, hip abduction, pain in all the joints, Osgood-Schlatter's Disease(knee problems), cavas feet(high arches), club feet(toes turned in at birth), tight hamstrings and heal cords, tongue tied at birth, memory and immaturity problems, 4' 10'' and won't get taller and she's 13. Alot of these disorders she has been diagnosed with sound like Roussy Levy Sndrome, Congenital Spondyloepiphyseal Dysplasia, Spondyloepiphyseal Dysplasia Tarda, Epiphysealis Hemimelica Dysplasia, or Diastrophic Dysplasia. But no doc seems to have put their finger on it or is afraid to. I looked up what you have and some of the symptoms sound like Sam's but not all of them. Keep searching for other rare diseases. Maybe we could help each other in keeping an eye out for each other. Yours really sounds like arthritis, have you seen any specialists. Sam has saw the Spina Bifida Clinic, Shriners, ENT Specialist, arthritis specialists, Oral Surgeon, Dentists, etc. but still, what is it. Ehler's Danlos Syndrome doesn't sound like yours all the way esp. with the way explains the skin. What do you think?

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ShaBaby

 
Old 05-25-2003, 08:56 AM   #4
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Hi there ShaBaby. Due to all my "issues" this will be a long post. Sorry to hear about all the medical problems your daughter is suffering with. I also have tmj, periodontal disease, spina bifida occulta and mild scoliosis, bladder incontinence and now crohns disease. I have been having a lot of pain in my sacrum area, mid back on left side extending over to the bottom ribs on that side. Now the last few weeks I have been getting severe tmj headaches and my jaw hurts to chew anything and terrible aches in my hands, my thumb on my left hand always feels as though it is on fire, the inside of my right elbow "locks at night" and is excruciating. I have had surgery for carpal tunnel syndrome about 4 years ago but this doesn't feel like that. I've seen a rheumatologist and she seems to think everything is somehow related. Right now I am waiting for a bone density scan and a bone scan and I see a neurologist this week so maybe soon we'll have some answers. I can't take nsaid's because they cause my crohns to flare so I'm hoping something will be found soon. I have been to pt where they told me I have lost some of the mobility in my back (no mention of how though) but have found it seems to make it worse. If the neurologist I'm seeing has any new ideas, I'll post it for you as it sounds as though she has some of the same issues as myself.

[This message has been edited by twisten (edited 05-25-2003).]
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Old 05-25-2003, 10:47 AM   #5
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Twisten and Robynrose, there's a hospital in Los Angeles where I want to take Samantha to at some point. They deal with all kinds of disorders, right up our alley. They even have a specialist for multiple skeletal deformities! We have to somehow save up the $$$. Twisten, you should call Little People's Reseach Fund, Inc. and explain your situation also. They see people with our sort of problems all the time! I was shocked! Their expert died a year ago and there's no expert at all right now. Are you going to get a splint for your TMJ. I took Sam to two dentists, orthadontist and oral surgan for her TMJ. One dentist
practices in Naturalpathy or something like that, can't remember. They do a different procedure than the other dentists and oral surgeons. He makes a special splint, unlike the other places and hooks your mouth up somehow to a computer and all kinds of neat things but I can't afford it now, it sounded like about $5,000. His name is Dr. Eastin and he's in Coeur d'alene if you'd like to contact their office. Maybe he can tell you of other professionals in the states that specialize in it. Yes, I think our symptoms are related to a specific disease too, but which one is the problem, right? Right. Hopefully with our posts, we'll find more people like us. Please also look up the rare diseases that I mentioned and see if any of the symptoms look familiar. I'll send another post in a min to explain more.

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ShaBaby

[Edited to remove website.]

[This message has been edited by Well-come (edited 05-26-2003).]

 
Old 05-25-2003, 10:53 AM   #6
ShaBaby
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Twisten,

Sam has a problem starting to go to the bathroom, both #1 and #2. The urologist says there's nothing that can be done about it. It's because of the spina bifida occulta. They said she just doesn't relax. I know there's more to it than that but of course, the specialists are the ones that think they are the only one's right.

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ShaBaby

 
Old 05-25-2003, 10:56 AM   #7
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Twisten,

The Sacrum area is the tail bone I see. My daughter
doesn't have pain that low. But I still believe your problems are a rare disease, all go together, from what I've read.

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ShaBaby

 
Old 05-25-2003, 10:58 AM   #8
ShaBaby
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Twisten,

What is NSAID's?

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ShaBaby

 
Old 05-25-2003, 11:03 AM   #9
ShaBaby
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Twisten,

Samantha's hip abduction causes her hip to get locked, her spine to get locked and her knees too. I'm not sure what made Samantha better but I believe it was the weather. Even her eyes, and joints, feet, calves, etc. are painful, burning like yours, sharp pains, sometimes pins and needle feelings.

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ShaBaby

 
Old 05-25-2003, 11:05 AM   #10
ShaBaby
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Twisten,

I did take Sam to a hand doc because of her wrists being in pain so much and they sent her to a neurologist for nerve probing and she didn't have carpal tunnel and I sometimes wonder if they are wrong. It gets so painful, it goes numb. Cold water
makes it worse, esp after swimming and being in snowy weather.

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ShaBaby

 
Old 05-25-2003, 11:06 AM   #11
ShaBaby
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I don't believe Sam has had the bone density test.

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ShaBaby

 
Old 05-25-2003, 11:12 AM   #12
ShaBaby
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Diastrophic Dysplasia mentions some of these things:
congenital, abnormal development of bones(skeletal dysplasia) and joints(joint dysplasia) in many areas of the body, scoliosis and or kyphosis, thumbs deviating away from(abduction)from the body, club feet, spina bifida occulta, etc. Sound familiar. Those other disorders list some of the same things, the disorders I listed above.

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ShaBaby

 
Old 05-25-2003, 09:30 PM   #13
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twisten HB User
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ShaBaby, thanks for all the info. I am going to look up the disorders you mentioned. I have never heard of them. As for the splint, I was supposed to get one 4-5 years ago but before it could be made I ended up in ICU with a fistula (before my crohns diagnosis) and basically have been battling back and crohns related issues ever since. The tmjd hasn't bothered me much until recently and I think I did it myself when I wrenched my neck because thats when it started up again. Nsaid's are non-steroidal anti-inflammatories such as aspirin, ibuprofen for over the counter meds and vioxx, celebrex and many more as prescription. This Little People's Research Fund, what exactly are they, do they see adults, I'm 38 and in Canada. I was told the reason why 1 leg of mine is shorter is because of the scoliosis but they keep saying mine is mild and shouldn't be what's causing the pain. But if the spine is not properly aligned how can it not bother it?? I hear ya when you say specialists know everything. I went for just about 20 years before my crohns diagnosis. My mom and I were told it was all in my head, I just didn't want to go to school etc. and when I was in my early 20's I was told it was IBS and had no tests done at all. Then when I started having back problems I was told I had arthritis and it was only in the last year they told me I had scoliosis and spina bifida occulta. Is your daughter in a lot of pain? I sure hope not, that is so young of an age to have to suffer so. Not that its any better as an adult, but for a kid its just so much crueler. The sacrum is actually just above the tail bone. I believe that is called the coxxyx sp? Has anything shown up in her bloodwork at all, such as high WBC or low iron etc? I'm going to try to do some research on the disorders you mentioned and see what I come up with. Please keep me informed as to how Sam is doing.
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Old 07-27-2003, 07:18 PM   #14
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Shababy HB User
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Kristen,

My daughter received a new diagnosis, it's Right Hemispheric Learning Disorder. It's very complicated and I haven't met a sole with it yet. It's caused
by one of her spinal disorders. Little People Research Fund does see all ages. They have an 800 #. Are you interested in contacting them? No, Samantha's bloodwork shows nothing. She complains alot of water running feelings through her spine and fingers. I read in the Jan 03 Reader's Digest how Penn State had said healthy joints hold water in the joint tightly, it's when it leaks out is when it destroys the cartilege and it's too late and the damage is done. They have a new MRI that can look for amts of water in joints to see if the water level has changed. Amazing breakthrough news. I'd like to find out more about that test. She also has tremers in her eyelids and legs and heals that don't like to go away.

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Old 04-29-2005, 09:31 AM   #15
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Shababy HB User
Re: Teen w/TMJ & multiple skeletal deformities

I'm back! My daughter was recently diagnosed with a heart murmur, polycystic ovarian disease and hyperandrogen syndrome and a positive speckled ANA. I did send her records to California to the Skeletal Dysplasia Specialist but they said it is NOT Skeletal Dysplasia like Shriner's had diagnosed her with. Matter of fact, Shriner's wasn't even sure when they diagnosed her. The Skeletal Dsysplasia Specialist said she has an unknown Syndrome. Ehlers Danlos org recently told me that I should take her to someone in Seattle to see if she has this disorder. They said it sounds alot like it. I don't know who to take her there to though. She recently started having tremors that I can see. They are all over her body at different times in different places. It has gotten progressively worse. It's back to another neurologist for the 3rd time. This time a pediatric neurologist. She also feels the cold sensation of liquid running through the joints. I wonder if the liquid in the joints is running out. I've read that it can come out of the joint. How do I find out for sure. The docs around here don't have the MRI for it. But the big hospitals back east do. We are out east in Washington above Oregon and west of Idaho. She will be 16 in September.

 
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