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Finding a specialist who provides individualized treatment
Connect is an amazing place to support, educate, and help each other. We're spread out across the country, and even the world, so our experiences are varied because of this.
One thing most of us have in common, is the struggle to find the "right" doctor.
I've been doing all that I can to educate myself on osteoporosis treatment--Great Bones by Dr. McCormick, Dr. Ben Leder's Combined and Sequential Approaches to Osteoporosis Therapy, the very informative YouTube videos by Dr. Doug Lucas, and delving into the peer reviewed research. Having done so, I can't bear the idea of burning through multiple specialists to find one willing to do the testing and research needed to be able to figure out and treat the cause of my bone loss.
The chance that anyone in my area reads this and is able to make a suggestion is slim, but it's worth a shot.
I live in the midwest U.S. Unfortunately, the Mayo Clinic is not on my plan (it's and HMO). Much of the UW (University of Wisconsin) Health system in central and southern Wisconsin, as well as Swedish American in Rockford, IL are on the plan as well as smaller community based systems throughout the region all the way west to Dubuque, IA.
If by any miracle someone out there can point me in the direction of an open-minded and capable specialist worth looking into, I'd be especially grateful.
Feel free to send me a private message if you prefer that to posting.
Thank you!
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@hopefullibrarian I wish I was in your area to make a recommendation. I am post-menopausal and over 65, and had cancer treatment that opposed estrogen, so the cause of my osteoporosis is obvious. Are you pre-menopausal? If older, I am afraid the cause is loss of estrogen and basically age-related.
I hope you find a doc who will discuss info with you and let you make choices. I have often posted about how I chose Tymlos because the dose is adjustable and I could ramp up.
My doc is willing to do a 20% test dose of Reclast as follow-up and has now relented in prescribing Evenity first. With the impressive research you have done, you may already know what you want so the main challenge is finding the right doc who will work with that. Keith McCormick does consults by phone and I use him as an adjunct.
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4 ReactionsI'm 2 years post menopausal, however I've almost certainly had undiagnosed osteoporosis for several years.
I've had hip pain off and on for about 10 years. It would come and go, so I never saw a doctor about it. I wish that I had, because now I know that can be one of the signs of osteoporosis.
I have epilepsy with rare tonic clonic seizures. Three years ago during one such seizure, I suffered a vertebral compression fracture. Even though I was 50 years old and in perimenopause at the time, no one (ER doctors, GP, Neurologist) seemed to know the cause. I burned through 3 doctors, and a physio before one of them considered the possiblilty of osteoporosis. Even then, I had to push for a DEXA scan.
When I was finally diagnosed 11 months ago, my t-scores were very low---3.2 femoral neck and -3.7 lumbar.
I also had a CMP which showed that my vitamin D levels were extremely low despite supplementing for several years with a high quality tincture of 5000 IU per day.
In my estimation, all of these factors comined suggest that my bone loss is due to in part by something more than aging. Side note: AEDs (anti-epileptic drugs) can cause bone loss, however the one that I take supposedly does not.
Recently, I asked my Osteopath to run more tests to explore the cause of the vit. D deficiancy. His reply, and this is a quote, was, "That would take a lot of work on my part."
It's time to find a new doctor.
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2 ReactionsI am also on anti seizure meds that supposedly do not contribute to my osteoporosis. I have taken meds for 45 years and suspect that any long-term meds may contribute to other problems. I have not followed through with any other Drs . My bone density improved 4% with Evenity. Hope you receive some answers and better care.
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1 ReactionWhat a great result with Evenity. I'm so happy for you. Lock in those gains as best you can.
Forty-five years on seizure meds? Wow! What kind of seizures do you have?
Epilepsy and and osteoporosis can be an unfortunate combination of disorders. So many of the AEDs are proven to cause bone loss, and the meds are really necessary in most epilepsy cases.
We have do everything that's in our power for our health. Taking Evenity seemed like a good choice on your part. That's one of the meds that may be in my future.
If you ever want to chat, feel free to send me a private message.
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1 ReactionWhich anti seizure drug were you on? Keppra/levetiracetam?
Lamotrigine
lamotrigene
windyshores, again, I really like your doctor.
At least he was honest about why he didn't want to help. That made my decision to seek help elsewhere that much easier.
I love it when they say, "I don't know." It's just so honest.