Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
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For reasons best known to the medical community, there is no specialty called "Osteoporosis." On behalf of a friend who is losing calcium dramatically and cannot survive such a condition, who is in great pain, who has fallen five times in the last couple of weeks, and who has been told there's nothing that can be done for her, I am writing to ask for the name of a specialist from any field who can help, or for trials occurring to treat her condition. She is a lovely, middle-age lady who needs help from someone, somewhere. If more information is needed, please let me know.
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@lioness. There were delays, whatever, but somehow initially, even with x-rays, the break was missed. She's scheduled for an MRI this week – hope it will provide more information. She's been in a back brace for more than six weeks; if she removes it, the pain is awful. There are more stories of errors made by the medical staff, but that she's being told there's nothing that can be done for her that has me so upset. It seems to me it's a life sentence! I note your question about CBD cream – I was looking into it for my friend so I hope you'll let us know how effective it is.
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@I will didn't come yet hope your well today not here just had my back injected
@trishanna when I fractured my back Dr put me in a turtle shell brace wore during day ,took of at night for 3months then water therapy for 6 months.
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@gailb Id like to ask about CB D cream I ordered some but am unsure if you use it just when you have the pain or should it be more on a regular basis ? Since you have used it can you us some guidelines?Thanks
Thanks for your question lioness. I used marijuana cream a couple of years ago before my back surgery. I used it for pain each morning and each evening on the back of my neck and on my right hip, thigh, and calf down to my ankle and toes on the right side. It helped me tremendously as I was consulting at a job in Washington state and was in a lot of pain. I used it when I was having pain and didn't have a schedule for how often. I never felt high from the cream. It was very surprisingly helpful for my pain. However, I also tried some edible marijuana in chocolate and I got too much I guess because I was so high it really made me paranoid. I did not like that at all. My use was only for pain.
I haven't used CBD cream, but I think I will try it. I hope you find relief for your pain.
@lioness. Yes, that's the garment my friend has been wearing – 24/7! Don't know how she can stand it – especially with the terrible heat we've been having. Interesting the schedule you were on. With no further instructions from doctor, she finally took it off and that's when the pain hit! Shall be getting an update soon from her – hope for some good news!
@gailb thanks for information I will try using it when in pain I had back injection today hope I fill better tomorrow.
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@trishann no wonder she couldn't stand it how did she sleep with it on???? Dr told me not to wear it to bed ,poor thing did he forget to tell her that?If she,s uncomfortable with him seek a orthopedic Dr.that's who I had.
To tiny 33 – This is a long excerpt from a web site that states at the top “no longer accepting notifications on this website”. I wonder why it was taken down (maybe complaints from drug companies or their affiliates?). Anyway, the information given by Tom Huntington as answers to readers’ questions confirms what I have read in many hours spent researching this subject on websites including Mayo Clinic, Johns Hopkins, Better Bones and User Reviews. The following is long, but worth your time to read it. I’ d like to add a bit of my own advice: don’t do anything until after your next bone scan and ask your doctor for the results (they don’t always tell the patient automatically). The excerpted text follows:
Susan Kleinhofer July 17, 2008 • 10:33 pm
I’ve been prescribed Forteo, which has been in my refrigerator for a month. I am afraid to take it.
Does anyone know how Forteo compares with Reclast?
How common are adenomas which prevent calcium absorption? Would my endocrinologist likely have checked for something like that if he already knew I had osteoporosis? I am 59. Was shocked to find out I had osteoporosis six yrs ago, then was prescribed Fosamax which I took irregularly at best. I fell off a ladder a few years ago, shattered a leg bone, a commminuted tibial plateau fracture, and what a wake-up call that was. Eleven screws and a few plates in my leg. Now I’ve been prescribed Forteo after not making much progress on my bone scans. I make myself walk a few miles a day, every day. I feel better over all, have more energy and I feel like my balance has improved. I use a treadmill in winter. I am not a fearful person at all, but boy am I afraid of falling on ice now. What do readers think of Forteo, Reclast, and does anyone know about taking Strontium instead? What about the argument that taking bone building drugs like Forteo will cause the bone to become weak because it does not make bone on its own? Lots of questions. Thanks for any input. SK
Tom Huntington July 18, 2008 • 12:44 pm
Sadly you’re right, and I believe the fundamental reason for this is the general ignorance of scientific methods by doctors. Although they like to call themselves “medical scientists,” in fact they have almost no training in scientific methods such as you have with the “hard sciences.” For this reason they do not know how to properly construct an experiment and correctly interpret its results.
For doctors the only concept they have of “science” is the “double-blind placebo controlled experiment.” In their world, paying attention to “anecdotal information” is not science and therefore any mention of success by any non-pharmacological treatment is rejected.
Because most doctors have not taken courses in the hard sciences they are not aware of the simple fact that all science starts with careful observation. For them, science only consists of stating an hypothesis, which seems to always concern the effectiveness of a drug. And when it comes to experiments, the concept of isolating a single variable is apparently unknown.
Not to be left out, of course, is the nearly total lack of knowledge of math and statistics. In most of their so-called “studies” the results are always stated in such a way as to imply a causal relationship when in fact the study shows no such relationship. And to add frosting to their cake, everything is stated as a relative risk reduction, rather than absolute risk reduction, in order to create a banner headline.
I am not optimistic. As I see the situation, huge amounts of money are spent on pseudo-scientific nonsense, and as a result real scientific inquiry as to the biological nature of various diseases is thwarted.
I will add one more observation. I have seen doctors in other countries as well as the US, and I would say that in general doctors outside the US are better trained. This is consistent, of course, with the surveys which show the US healthcare system comes up short in relation to other countries. No surprise from my personal experience.
Gail Perry July 18, 2008 • 7:18 pm
“In their world, paying attention to “anecdotal information” is not science”
That’s because it’s not. 🙂
Tom Huntington July 18, 2008 • 10:35 pm
I know you are suffering and you mean well, but it is evident you do not possess a degree in physics, as I do. The fact is there can be no meaningful progress until a fundamental understanding of the nature of osteoporosis is elucidated. Such an understanding does not exist today, and in my opinion it is the direct result of an inadequate grounding in scientific research by the doctors who carry out their “studies.” It is clear that a collaboration between physicists and physiologists needs to take place, much as Norbert Wiener did years ago.
Michael July 21, 2008 • 12:46 am
#79 has a good point when he says: For doctors the only concept they have of “science” is the “double-blind placebo controlled experiment.”
Doctors don’t realize that by requiring double blind studies they are causing a bias towards pharmaceuticals. It’s very easy to do a double blind study with pills. One group gets the pill with the drug, the other group gets the pill without the drug.
How would one do a double blind study comparing Fosamax to weight lifting? It pretty much can’t be done. And there is no profit motive for anyone to do one. Even though strength training would probably benefit the great majority of relatively healthy people prescribed Fosamax, as far as most doctors are concerned there is no “scientific evidence” for it. So they don’t mention it.
voracious reader July 21, 2008 • 9:18 am
In regard to #79 and #82, again this is why I recommend that people read John Abramson, MD’s Overdosed America. Not only does Dr. Abramson explore “statistics” and how they relate to clinical trials, he discusses at length the designs of clinical trials. Now that’s were everything gets sullied. Often, when the clinical trials are designed, they must decide, will they be comparing a drug to a placebo or to another drug, or lifestyle. What makes the design of the trial even more questionable is the sample population that they use. Often a sample will be “cherry picked,” meaning, the sample population will have no other health risks except for the illness that the medication is being tailored for. Once a medication is approved it is usally prescribed for an entire “population.” The problem with that is twofold. One, extrapolating who may actually benefit from taking the medication is not an exact science. An example is giving statins to women who are at low to moderate risk of developing heart disease, or of the recent debate caused by the Pedicatric Association’s recommendation to give statins to children. Secondly, if you are prescribing a medication that has been approved but the sample was “cherry picked,” would the medication adversely affect a person who is on several other meds and has several other illnesses?
Giving the pharmaceutical companies the upper hand of the design of clinical trials has become, I believe, the worst decision that the NIH and the FDA has ever made.
healthinfo July 21, 2008 • 2:08 pm
Re: # 63
Many thanks to K Cody of the http://www.american bonehealth.org for making a little extra effort this morning confirm what has been expressed by Healthinfo and others.
Per KC, “So where is the truth in all of this information? Sometimes the truth is buried in the fine print, sometimes the design of a study creates faulty conclusions. In the case of Ms. Parker-Pope’s article, she admits in the article that cases are rare.”
And how right she is. This story is about a somewhat rare adverse side-effect. So, a look at the fine print at KC’s website revealed more than KC might have wanted in the fine print. And more than other websites, one by Merck & Co., might want exposed.
Fosamax and its companion Fosamax PLUS D seem to have more important and frequent side effects as found at http://www.drugs.com/fosomax.html and http://www.rxlist.co.cgi/generic/alendron_wcp.html@W
A visit to Merck & Co’s own website for this drug should make you think more about this prescription drug. The list of warnings, contra-indications and adverse side effects is just too long to repeat here and are not limited to rare cancer or dental issues.
Yes, the drugs can have side effects, serious ones. I took bsiphosphonate for 5 years, had some increase in density, took a 2 year break, went back on them again, but no effect in the second round, which is why I am now using bone-builder Tymlos. I am lucky, While on Fosamax, I did not have any of the leg pains, etc, that others have experienced. Really, no side effects or broken thighs. So for me, pharmaceutical with no side effects (at least that I felt) was worth the possibility of reducing risk of activity limiting and painful fractures. I do see an endocrinologist, who goes over possiblities with me. She recommended getting calcium mostly from diet. I take extra Vit D, and I do weight bearing exercise every day (or most every day). The pharmaceutical approach may, for the reasons you give, not be good for everyone, but it does work form some people, and I hope it does for me.
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Checked to be sure – my friend wore the "shell" 24/7 for six weeks ordered by an orthopedic specialist! She's aware of water therapy, but for some reason – perhaps the shell – hasn't started it yet. Did you find it helpful, @lioness? Anyhow, she is due to start a drug called zoledronate. Anyone familiar with this drug? Side effects appear to be severe!! She's also developed inflammation everywhere and is in pretty constant pain. Comments appreciated.
I just had a Dexa Scan. It says I have low bone density but doesn’t mention Osteopenia or Osteoporosis and gives a T Score of -0.1. I believe that’s Osteopenia.
Is that right?
https://mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis/art-20304599 Mayo article says -.1 and above is normal bone density, and -1 to – 2.5 would be start of low bone mass
Thank you betterbones. Sure glad I refused all the cortisone injections the doctor wanted to give me.
I had questions about why Osteopenia wasn’t mentioned in my recent scan since I was diagnosed with it previously. Today I went and picked up my Dexa Scan report. The report says “Low bone density or low bone mass are used in lieu of Osteopenia.” I never realized the terminology had changed. I earlier posted my T score was -1. After reading the report nowhere is -T 1 mentioned. I don’t know why the receptionist told me that.
It says “Low bone density.” The lowest T-score is
-3.1 at the left femoral neck.”
So my question, is it Osteopenia Osteoporosis or what.
Thanks for any help.
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@jakedduck1 That is a good question, Jake. I was not aware of any change in terminology regarding the Dexa Scan reports. Did your requesting doctor offer you any information?
I would be interested in hearing from others about this as well.
I called my doctors office and talked to receptionist. My belief is nothing serious or that needs treatment is wrong. If it were my doctor would have me come in. Receptionist did say I have to be scanned every year going forward. This was my first scan and I’m 65. After being on seizure meds for 51 years I’m surprised my scores weren’t worse. Walked all day for years for 8-15 hours a day. That must have helped.
Thanks for replying Teresa.
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