Marie27
01-04-2005, 05:10 PM
Hello, everyone,
I've been surfing the boards for a while and thought I'd post. I'm 27, almost 28, and here are my scores:
L1: -2.9, L2: -2.4, L3: -2.5, L4: -3.3, Neck Left: -.9, Neck Right -.9, Wards Left: -1.3, Wards Right: -1.2, Troch Left: -1.6, Troch Right: -1.1. I am caucasian, 5-5, 123 lbs.
My osteoporosis stems from stress induced amenhorea. I began my cycle at 13, but was irregular till a little over a year ago. It was common for me to miss 3-4 months at a time; once I missed 6 months. I've gotten better w/ stress management and have had a regular cycle since November 2003, however. I didn't require oral contraceptives to restart my cycle. I don't smoke, don't drink alcohol or caffeine, I drink milk and take 1,200 mg calcium/day. I work out and am otherwise healthy.
My doctor tested my parathyroid, calcium, Vitamin D, Vitamin D hydroxy, phosphate, NTx, creatine and growth hormone. All came back normal.
I am looking for a specialist who can give me a complete baseline workup and drug counseling prior to making decisions about drug therapy. (I am concerned about bisphosphonates and parathyroid hormone b/c I desire to have children in the future.) I am also looking for a doctor who can keep an eye on me, as I know I'm in for a lifelong journey.
If anyone has seen a good specialist, or knows how to get in contact with a specialist (I've looked into Columbia, Mass General, Cedars-Siani, Cleveland Clinic, McIlwain (sp?) in Tampa, Mayo in Rochester, MN, and Duke). It's really hard to get through to people.
I appreciate the information I've received from reading all your posts. Happy to meet you all!
Marie
I've been surfing the boards for a while and thought I'd post. I'm 27, almost 28, and here are my scores:
L1: -2.9, L2: -2.4, L3: -2.5, L4: -3.3, Neck Left: -.9, Neck Right -.9, Wards Left: -1.3, Wards Right: -1.2, Troch Left: -1.6, Troch Right: -1.1. I am caucasian, 5-5, 123 lbs.
My osteoporosis stems from stress induced amenhorea. I began my cycle at 13, but was irregular till a little over a year ago. It was common for me to miss 3-4 months at a time; once I missed 6 months. I've gotten better w/ stress management and have had a regular cycle since November 2003, however. I didn't require oral contraceptives to restart my cycle. I don't smoke, don't drink alcohol or caffeine, I drink milk and take 1,200 mg calcium/day. I work out and am otherwise healthy.
My doctor tested my parathyroid, calcium, Vitamin D, Vitamin D hydroxy, phosphate, NTx, creatine and growth hormone. All came back normal.
I am looking for a specialist who can give me a complete baseline workup and drug counseling prior to making decisions about drug therapy. (I am concerned about bisphosphonates and parathyroid hormone b/c I desire to have children in the future.) I am also looking for a doctor who can keep an eye on me, as I know I'm in for a lifelong journey.
If anyone has seen a good specialist, or knows how to get in contact with a specialist (I've looked into Columbia, Mass General, Cedars-Siani, Cleveland Clinic, McIlwain (sp?) in Tampa, Mayo in Rochester, MN, and Duke). It's really hard to get through to people.
I appreciate the information I've received from reading all your posts. Happy to meet you all!
Marie
Sponsor
Talan3
02-11-2005, 07:37 PM
Hello Marie,
Like you, I am quite young (38) and my scores are not much different than yours. My osteoporosis was brought on by a deficiency in my pituitary gland in my early 30's and have only recently found out my condition. Oddly for me, I have always been into weightlifting, which is suppose to ward this off. However, I presume my testosterone was low for longer than thought. Also, I do smoke, drink alcohol, and I enjoy my caffeine....which I obviously have to give up soon....
I have been searching everywhere for a good specialist as well. For some reason none of my doctors seem to know anything which would explain their lack of answers when I ask them questions. Unfortunately, I have not had much luck on the doctor front either.
Recently, you may be interested, I came across a study that is testing a drug, I think it is Alendronite, which is once a year intravenous that is currently used on cancer patients whom devolop this after chemo. The drug is suppose to have great effects for the cancer patients and hoped it will help Osteo patients.
Either way, if I do run across a good specialist, I will let you know.
Like you, I am quite young (38) and my scores are not much different than yours. My osteoporosis was brought on by a deficiency in my pituitary gland in my early 30's and have only recently found out my condition. Oddly for me, I have always been into weightlifting, which is suppose to ward this off. However, I presume my testosterone was low for longer than thought. Also, I do smoke, drink alcohol, and I enjoy my caffeine....which I obviously have to give up soon....
I have been searching everywhere for a good specialist as well. For some reason none of my doctors seem to know anything which would explain their lack of answers when I ask them questions. Unfortunately, I have not had much luck on the doctor front either.
Recently, you may be interested, I came across a study that is testing a drug, I think it is Alendronite, which is once a year intravenous that is currently used on cancer patients whom devolop this after chemo. The drug is suppose to have great effects for the cancer patients and hoped it will help Osteo patients.
Either way, if I do run across a good specialist, I will let you know.
CrohnieToo
02-18-2005, 11:24 AM
... If anyone has seen a good specialist, or knows how to get in contact with a specialist (I've looked into Columbia, Mass General, Cedars-Siani, Cleveland Clinic, McIlwain (sp?) in Tampa, Mayo in Rochester, MN, and Duke). It's really hard to get through to people. ...Marie
I've always been told that an Endocrinologist is "usually" the best specialty for treating and dealing with osteoporosis. Dr Jean Nelson with Genesys in Grand Blanc, MI is supposed to be very good but that would be for locals, its not like she is nationally known. (I only mention her in case you are in that area).
Since you are obviously willing to travel: US News & World Report rates the top 50 teaching hospitals in the country by department and the ratings are available at their website.
Mayo Clinic (Rochester, MN), Mass General (Boston, MA), Johns Hopkins (Baltimore, MD), U of CA (San Francisco, CA) and U of VA (Charlotesville, VA) are the top 5 rated for Hormonal Disorders (Endocrinology).
There is another organization who also rates hospitals by state (but not by department). I'm including the URLs for the ratings so you can pursue further information.
I will say that I am predjudiced for Mayo Clinic (Rochester, MN). My family has been going there for better than 40 years. We are sold on them. They are THE most efficient medical center I have EVER encountered. Mayo is a 12 hour drive for us. Once seen there they are great about working with your local doctors and prompt appointments there when needed.
2004 Top 50 Teaching Hospitals In The US Rated by Specialties. (US News & World Reports).
http://www.usnews.com/usnews/health/hosptl/tophosp.htm
List By State
http://webcenter.health.webmd.netscape.com/content/article/99/105322.h...
I've always been told that an Endocrinologist is "usually" the best specialty for treating and dealing with osteoporosis. Dr Jean Nelson with Genesys in Grand Blanc, MI is supposed to be very good but that would be for locals, its not like she is nationally known. (I only mention her in case you are in that area).
Since you are obviously willing to travel: US News & World Report rates the top 50 teaching hospitals in the country by department and the ratings are available at their website.
Mayo Clinic (Rochester, MN), Mass General (Boston, MA), Johns Hopkins (Baltimore, MD), U of CA (San Francisco, CA) and U of VA (Charlotesville, VA) are the top 5 rated for Hormonal Disorders (Endocrinology).
There is another organization who also rates hospitals by state (but not by department). I'm including the URLs for the ratings so you can pursue further information.
I will say that I am predjudiced for Mayo Clinic (Rochester, MN). My family has been going there for better than 40 years. We are sold on them. They are THE most efficient medical center I have EVER encountered. Mayo is a 12 hour drive for us. Once seen there they are great about working with your local doctors and prompt appointments there when needed.
2004 Top 50 Teaching Hospitals In The US Rated by Specialties. (US News & World Reports).
http://www.usnews.com/usnews/health/hosptl/tophosp.htm
List By State
http://webcenter.health.webmd.netscape.com/content/article/99/105322.h...
rubyleo
02-23-2005, 04:07 PM
More importantly what's your Z-score?