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should I see a specialist

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Old 09-06-2009, 07:54 AM   #1
irish eyes 1025
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Unhappy should I see a specialist

I'm the one who posted last week, my doctors office "forgot" to notify me 18 months ago that I have osteoporosis in my spine.

Needless to say I had my files sent to my primary care physician. After consulting her about the diagnosis, she sent me for a comprehensive round of blood tests but was adament about my starting on Acctonel right away, pending the results on the blood tests.

Would you / should I just be starting all this with a rhuematologist or do you think he would say the same thing?

I'm really really stressed about taking this type of medicine. I know not everyone has the horrific side effects, but I just can't imagine that a specialist would do anything different.

I'm so confused, please can I have your input?

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Old 09-06-2009, 12:08 PM   #2
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Re: should I see a specialist

Hi Irish were given some good advice on your other post. I too suggest you to read the Myth of Osteoporosis by Gillian Sanson. It's been very helpful to many us when were first dx and puts a new perspective on how to look at osteo. Do you have the results of the DEXA they forgot to send or has your dr. ordered a new one be taken? If you could post those scores it would tell us more of what your are dealing with. You're right, most dr. encourage people to start with the osteo drugs, because that is what they feel is the right thing. If something is broke they feel its their job to do something to fix it. I don't know if a specialist would give the same advice or not..i guess it depends on his treatment of choice for osteo. If your gut tells you that that isn't the path you want to follow then its up to you to decide what is right for you. I took actenol for a couple of months before i decided it wasn't for me, i never did feel right about taking it.. i then started strontium and haven't regretted that decision at all. For me that was the right choice.

Before you see the dr. to discuss test results write a list of question you want to ask about the treatment, options or any thing else you feel is important to making a good informed decision. take care..phyllis

Old 09-06-2009, 04:28 PM   #3
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Re: should I see a specialist

There is also a very informative site by Dr. Susan Ott - do a google search for her name and find the osteoporsis and bone physiology. On that site is the UK FRAX calculator that helped me put my results in perspective. My rheumy called me and was aghast that I am refusing medication at this time. I did a lot of searching about the biophosphates and the new findings re more brittle and micro cracks after years of use. Merck pharm has a big lawsuit against them re Fosamax and the recent articles also (see NYT) about the whole scam of biophosphates, and the large number of jaw bone necrosis cases.

I'm almost 63 and my recent scan showed severe osteoporosis in the spine (-3.7) I got a little panicky too, so I know how you feel. I know my risk factors which includes a lifetime dietary regime without fruits and veggies and I smoke. In the meantime, I will ask him to do blood work to determine if this is primary or secondary osteo. I want him to check calcium, magnesium, and parathyroid levels, etc. I also learned alot about calcium supplements.....I have GERD (like many americans I'm on Prilosec) and she explains that low stomach acid hinders TUMS (calcium carbonate) and to use Calcium Citrate instead.

I also will start a walking program for the weight bearing stimulation. My arthritis can only tolerate so much exercise. Plus I am on placquinil for possible lupus. My vit D level was low so he gave me a once weekly dose for 6 weeks and that brought my level up into the 40's so a low level of Vit D may have hindered the little calcium I get from being absorbed.

I think there needs to be much more long term research about these medicines. Many physicians have been brain washed by the pharmaceutical companies and have not read the most current professional literature.

Remember too that the results of the scan depend on the machine and software they use. You should be able to get a CD of the scan with all the numbers/readings and then plot them into the more detailed FRAX study. I did and it made quite a difference from the written report my doc got.....

Keep us posted!

Old 09-06-2009, 04:34 PM   #4
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Re: should I see a specialist

I agree with pyhllis. It would be helpful to know what your scores are? When I was first diagnosed in 2006 I had a -3 in the lumbar spine. I was so threatened, I was afraid to move about. I thought something would break by just taking something out of the fridge. I read some books about osteo and searched for info online. My decision was not to take any of the biophosphates. The jaw necrosis side efect scared me half to death. I embarked on a new diet of vitamins and calcium rich foods , and began taking strontium.Also started walking every day. Results for me have been very good. My lumbar spine is now a -2.2. I also got some exercise videos from the library which I use. I recently had a tooth pulled, and also bone graph surgery on my lower gums. If I had been on a biophosphate like actonel, or fosomax the dentist would not have done the surgery. Future dental work is always something to consider when going on those drugs, because many dentist won't or can't do any kind of surgery on you.My last dexa was dec. 08. Over the years many doctors have tried to get me to take fosomax etc. , but I always declined.Good luck to you in whatever you decide.

Last edited by tomatojuice; 09-06-2009 at 04:35 PM.

Old 09-06-2009, 05:10 PM   #5
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Re: should I see a specialist


Hello there

I also agree that reading ''The Myth of Osteoporosis'' is a VERY good read indeed. I highly recommend it. Helps to take away a lot of the fear and put things into a much more realistic perspective.

I would shy away from bisphosphonate meds if I were you. You can read about actual patients' experiences by doing an online search via any search engine and typing in the words ''patient medicine reviews''.

BTW. My dentist also advised me that he could not work on me if I was using ANY kind of bisphosphonate med!

I think you'll find those actual patient reviews and experiences most educating and certainly an eye-opener.


Just a question - and please forgive my indiscretion. I know that you're a breast cancer survivor. I've heard that often times breast cancer survivors are given bisphosphonate meds. Were you also advised to take them?

Luck to all,


Old 09-07-2009, 07:21 AM   #6
irish eyes 1025
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Re: should I see a specialist

I also might add what really scares me is that I have gum disease, so it's quite likely that at some point in m life I will have to have either a tooth extrated or dental surgery.

I've decided to take this all very slow......go to the library and get that book, get my results back from all my blood work, and then decide how I want to proceed.

Thanks, you ladies are the best!

Old 09-07-2009, 02:31 PM   #7
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Re: should I see a specialist

Hi Monte...Yes I am a breast cancer survivor. During my chemo treatments I was approached at least 3 different times by 3 different oncologist . All of whom were trying to encourage me to either enter a study or to just add zometa to my every 3wk chemo. I declined.It seems that right around the time I was getting chemo a study came out saying zometa can help prevent the spread to the bones. The study did not include post menopausal woman, with the type of cancer I had. So I then felt it was definately not for me. Then I had a dexa that showed a 10.8 % increase in bone density. The oncs were astounded and stopped bothering me. Also its been a year, and I have had one cat scan, two mri's, a couple of ultrasounds and so far all is well. I did have a tiny cyst on my ovary, which turned out to be nothing, but the gynecologist was so insistent that I take fosomax(because I have osteopenia). She even wrote out the script.Some doctors just really believe everything they are told from the drug companys. You can't really trust doctors completely anymore. Of course I didn't take the script.

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