Help! 21 year old with advanced osteoporosis...

Hey Everyone. Here is a brief summary of my situation. I was diagnosed with Advanced Osteoporosis October 2007. The reason we came upon this discovery is because I had three disc herniations and 3 cracked vertebraes from a fall in the shower. My DEXA scan then revealed I have sever osteoporosis. I AM 21 YEARS OLD!!! YOUNG!!! Shouldn't have osteoporosis...much less ADVANCED osteoporosis. My doctors are puzzled. I am seeing an orthopedist, spine doctor, family md, endocrinologist and no one can put the pieces together. I did have a baby boy July of 2007...and I personally think that may have something to do with it. My endocrinologists has labeled it "idiopathic" which I am not happy with...because that means there is no known cause for me having osteoporosis. I am basically looking for some insight on this disease at my age and if anyone knows of causes at this age. I am a very fragile 21 year old and I have to be extremely cautious with every day tasks. At any second I could fall and break something else, so Im constantly nervous. Please help! I live in Louisiana, and if anyone knows of a great doctor in this state for this condition please let me know!!!

By SaraMeeks
Posted April 14, 2008 at 8:56 am
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Hello:
It's hard to know how to begin a reply as I know that you must be devastated at this diagnosis. Having been in this field as long as I have, you are not the first person with such a story; nonetheless, it is very hard for you to comprehend. I have several ideas for you:
1. You are going to several doctors. It is imperative that you are seeing people who are knowledgeable about osteoporosis and its consequences; unfortunately, this is not always easy--you need to ask questions and expect answers but not all of the medical professionals you see will have satisfactory answers for you. I would suggest using the resources of the National Osteoporosis Foundation and also look into such organizations as the Foundation for Osteoporosis Research and Education (FORE) in CA, NIH, National Osteoporosis Society (NOS) in UK, and there is also information available through the American Physical Therapy Association (APTA.)
2. You are still of an age that you can work on attaining more peak bone mass. About 98% of peak bone mass is attained by age 19 but you continue to grow into your early 30's. Get all the information you can on diet and exercise to help you with this. A couple of good books I have used include The Osteoporosis Solution by Carl Germano and Better Bones, Better Body by Susan Brown. There are others but be sure to check author credentials.
3. I have spent the last 25 years specializing in the physical therapy management of osteoporosis and could probably recommend someone in your area who has taken my training. My website is www.sarameekspt.com and if you contact me via email, we could converse privately to see if there is someone who can help you. You have to be careful with exercise as, for someone with your severe condition, spinal flexion, rotation and side-bending exercises would be contraindicated. You cannot simply go into any exercise class and expect a program that is safe for you.
4. Please don't despair--there is much you can do. You might need a brace and you are fortunate (in a way) that a very good one is now available. The "bottom line" is to stop the fractures as soon as possible and strengthen your back muscles for support.
Hope this helps. Please feel free to contact me personally via email.

By Bill2
Posted April 14, 2008 at 9:03 am
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Hi,

I’m so sorry that you are going through this at such a young age. I have a rare case of male osteoporosis that was also classified as being idiopathic.

I have read that pregnancy associated Osteoporosis is very rare. If you had this, I would hope that your doctors would have recognized it. You may wish to seek the opinion of an Endocrinologist who has a special interest in Osteoporosis. Perhaps contacting the Endocrinology department of a local hospital or asking your doctor would help you identify some one near where you live.

I wish you and your baby the best!

By MotherGoose
Posted April 14, 2008 at 10:37 am
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Sara'a advice above is excellent and I would definitely take her up on her offer, if I were you.
Good luck, and please keep in touch with this group.
We'll be rooting for you!
Lucy Buckley PT

By scallicoatte
Posted April 14, 2008 at 10:44 am
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Thank you all for all of your support and input! FYI I do have a back brace that I wear all day at work when I am sitting at my desk and when I am doing physical activities. I have an apt. with an endocrinologist at the end of next month, he does have a lot of experience with osteoporosis in women...so I am hoping he can shed some light on the situation. FYI my calcium is elevated...the problem is that we can not figure out why my body isn't absorbing the vitamins, minerals, calcium, etc.! I think I have an underlying condition...whether it be rheumatoid arthritis, pernacious anemia, celiac...etc....I think that is what is causing the great bone loss. I like to think its not idiopathic. I was in nursing school up until I broke my back...so I have some medical knowledge and spend plenty time researching reasons why I could have this condition.

Once again thanks for all your posts....it is truly comforting knowing Im not alone with this condition.

By windblown
Posted April 14, 2008 at 12:48 pm
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scallicoatte: Sorry to hear you have osteoporosis at such a young age. Unfortunately your story is not unusual. I hope your Endo figures out what's going on.

You mentioned elevated Ca, would you mind saying what your score is and whether it is an ionized Ca or total Ca test? I also have elevated ionized Ca and no one can figure it out, except that it explains my bone loss. Generally they'll test your PTH levels first, with elevated Ca, and then go from there. How's your D level is it okay. Are you spilling Ca as well in your urine. My urinary Ca is normal as well as PTH, but I have low D and high D 125, so my labs don't make any sense.

I was dx with osteo at 30 and am now 54, with many vert fx's and surgeries, but I'm almost finished with Forteo and my scores have gone up a whole point ( -3.6 to -2.6).

If you find out what's causing the calcium issue that might explain why you're leaching it from your bones. Let us know what you find out I would be very interested.

Good luck and glad you could join us!!!

By SaraMeeks
Posted April 14, 2008 at 1:04 pm
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I'm glad you've found someone to work with. The chances are fairly good that your osteoporosis is caused by a secondary condition. To the best of my knowledge, osteoporosis associated with pregnancy is usually transient; however, I suppose that is not always the case.
What kind of a brace are you wearing? If it is supporting only your lower back, it's not going to help the thoracic area which is where you will have most of your problem with osteoporosis.

By SuzaFrancina
Posted April 15, 2008 at 9:01 am
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I wholeheartedly agree with the recommendations made by osteoporosis expert Sara Meeks. The book that Sara recommends, " Better Bones, Better Body," by Dr. Susan Brown, gives a wealth of useful information you can use your whole life.

Susan Brown is Director of the Osteoporosis Education Project. I also recommend her website,
www.betterbones.com.

I have posted a series of articles on this site on yoga and osteoporosis. I will post another series next month. The books listed on my website below have chapters on yoga for healthy bones that you may find useful, especially the stories written by people with osteoporosis.

Best wishes,
Suza Francina,
Certified Iyengar Yoga Instructor
www.suzafrancina.com

By BobWallace
Posted April 15, 2008 at 4:02 pm
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I am a man with osteoporosis. The cause is Celiac Disease which is 97% undiagnosed. I have had for years but only discovered it recently. Another symptom of Celiac is anemia. My hips are so thin they could break without falling or any trauma.

By scallicoatte
Posted April 16, 2008 at 8:27 am
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I was tested for celiac...and that did infact come back negative. I do have anemia. Not quite sure on all the levels for my Ca, etc. Never have actually seen the results just told their elevated, not high, low, etc.

By oreo
Posted April 16, 2008 at 2:26 pm
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I'm real sorry to hear of your troubles. My dad has advanced osteo. When I was 22, I was put on a drug by a quack psychiatrist who thought I had epilepsy. I gave me anemia, and I went from 160 pounds to 75 lbs in 6 months. Every rib was showing and I couldn't eat at all! At the end of this, I was hallucinating, the floor shifted and things like that. My parents had to cart me to the e.r....death's doorstep! well ,as you can see from my photo I'm very healthy, weigh 170, and feel good....I am very leary of doctors, and observe common people very closely...I've learned more from this site than anything....I would advise you to begin lifting small weights and gradually build up. I'd love to be 21 again.!! Start with 3 pound weights.

By sunny1
Posted April 19, 2008 at 4:20 pm
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I have a male friend who has severe osteoporosis. His doctors have determined that he has an absorption problem which has caused his osteoporosis. He is still going through testing to determine exactly what is the cause. There has been some discussion about Chrone's Disease as being the cause. I know that the Celiac disease can cause osteoporsis. That too comes under the heading of malabsorbtion. There is an easy antibody blood test for that.
Good luck with your visit with your new specialist.
Sunny1

By Jacqueline
Posted April 20, 2008 at 11:06 pm
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One of the members suggested that you lift weights.
It's important that you be evaluated by a physical
therapist who is an expert in osteoporosis before
you lift weights. The wrong exercise program can cause profound harm, and although many physical therapists say they can work with you, they do not have the expertise. Good luck.

By dithyroo
Posted April 26, 2008 at 12:56 pm
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I'm so sorry for what you are going through. I was diagnosed at age 28 (am now 30) because my Dad is a dentist and he has noticed through the use of digital x-rays that more and more patients of all ages have suspiciously dark looking jawbones. He saw this in my 24 year old sister and sent her to the doctor and they determined she had osteoporosis in her spine. So he sent me. I have it as well. My Mom and her sister have osteopenia, but my grandfather died of osteoporosis related decline after almost all the vertebrae in his spine collapsed. In the past two years I have been to so many specialists, it's insane. I have also been the acclaimed Johns Hopkins Hospital in Baltimore because it is relatively close and they have no answers. We have found that I have ideopathic hypercalciuria ( I pee out too much calcium). You should check for that more than once because results could differ on different days. I am now trying a diuretic to help me retain calcium and taking 1890mg of calcium a day with 1200 IU of vitamin D. We are still awaiting results of that- I am hopeful it will work, but I just don't know. I am hoping to have a child soon, but worried about all these problems, and worried that if I already have low spine density that having a child will make my weak bones collapse since i have been fortunate thus far to not break a bone in my spine. If I find out more, i will let you know.

By scallicoatte
Posted April 28, 2008 at 8:51 am
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Wow! Our cases seem so similiar it is scary. And I can empathize with the wanting a child. I was told I would never have kids due to endometriosis and ovarian cysts, so when I became pregnant and actually had a healthy baby boy...needless to say I was beside myself with joy. I say go for the pregnancy. It will be a long, painful road but the birth of your child is way worth the torture it does to your body. I have 3 herniated discs due to the pregnancy...and 3 fractured vertebraes but I would go through evey ounce of pain again just to have my son. I am not planning anymore pregnancies...because I do not know how much deteriation my body can handle. But I hope you make the right decision.

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