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Horror Story with a DEXA bone density test

nathji
0 Recommendations

I have a reason for being scared of DEXA tests. In 2007 when I had my first DEXA scan done -- the first machine showed dreadful scores of T = -3.7 and T = - 4.2.

I was then told by the doctor that I must start Forteo injections daily--which were prohibitively expensive, if I wanted to save myself!!

I got so scared that I was even afraid to sit down and get up from chairs lest I have a spontaneous fracture!! I walked in a weird Charlie Chaplin sort of way in the house to avoid hitting the feet against each other or against furniture, lest I break a bone because they were practically shown to be hollow by the DEXA test!!

Then a sixth sense told me that I might try another DEXA machine in a larger clinic. I did that and the second machine showed mere T= -1.9 osteopenia!!

Probably the first machine had not been maintained well and was giving wrong results. Or maybe the positioning of the body under the machine was wrong.

In one DEXA machine they put a box beneath your knees while you lay down, whereas in the other they just asked you to lie straight without raising the knees!

I wonder how many persons have had this horrifying experience with DEXA machines doling out wrong results. Every time I hear the doctor say in a non-commital way "Only a DEXA scan will show!" I wonder which machine he is talking about!!

This is regardless of how much Calicum and Vit D we take!!

I wished to share this story so that people who get bizarre results with DEXA machines should get them double-checked!! It can be quite expensive getting repeat DEXA scans done in India, so many people just sit quietly with the results of the first machine, and suffer wrong medication for years.
I wished to share this story with others so that they may not get too despondent of the DEXA results are bad-- they might try a second machine!!

I recall the time a Lab Test had shown Urea of 300 for a friend of mine! And it was a surprise he wasnt in kidney failure. He was in state of great panic and misery until he got a repeat test which showed that the Urea was around 30. The typist in the first lab and wrongly typed an extra 0 in the first report, making 300 out of 30!!

When doctors say "Only a lab report will show", I tell myself "Ha!"

I wonder if others have had similar experiences..

The maxim is : If the lab results are bad, don't be sad but go to another lab.

Yours,
Priya

Yours,

Explore topics in this discussion:

Cancer Surgery Falls Dementia Hypotension Osteopenia Influenza Osteoporosis Evista Dehydration Boniva Confusion Forteo Fractures Fever Fosamax Actonel Weakness Pain

26 replies

edie26

Priya,

Thank you so much for taking time to consider my situation. I plan to take your advice and check on several of the items that you mentioned. It is good timing that I will be seeing one of my doctors tomorrow.

Again, thank you for your time! Best wishes! Edie

nathji

Dear ViHay,

Thank you for your kind comment. I wholeheartedly agree with you that a better way has to be found. Hopefully the medical scientists are working on it!

Yours,
Priya

ViHay

Sounds too good to be true and it is ! Such scans done in health fairs, etc. are even more suspect than are DEXA "gold standard" scans done in reliable medical / health care settings.

I have no idea why they are allowed to be used. And the consumer could be putting his or her health at risk for relying on such misleading scans.

ViHay

I am not surprise at all regarding the horrifying DEXA results that were reported from the lady from India. These machines are not standardized and even in the best of Clinical laboratory settings, the readings can be off.

To get consistent results , you have to have your DEXA testing repeated every 2 years on the same machine ! What if you move away ? What if the health care provider upgrades machines ? Or goes out of business ?

It is because of this, that the DEXA scan is coming under attack by the medical field. There must be a better way to measure bone breakdown ! Even blood assays are not that reliable !

nathji

Dear edie,

I just wanted to add a Postscript to the reply I have already given. Ask your doctor whether you might need extra Vitamin B -- the B Complex Family -- they give injections of Vit B Complex in High Doses , I believe that Vit B 12 is the mosy important for nerve and muscles .. they have a synthetic oral comound called methylcobalamin -- and oral doses as high as 1500 mcg are give.

Maybe this would solve the leg fatigue-- if your doctor advises it.

Best wishes and good luck, I hope the problem resolves..

Yours,
Priya
(nathji)

nathji

Dear edie26,

I was extremely sorry to hear of your leg fatigue which is definitely more serious than mine. Have you ever looked for anything beyond osteoporosis for it?

The nausea and sick feeling could be due to low blood pressure when standing -- postural hypotension they call it. Take your blood pressure while lying down, then sitting in a chair and then standing-- and then after walking for a while. See whether it falls drastically.

The problem may be improper intake of fluids, or even a low intake of salt, silent dehydration while walking. Is the problem more pronounced in the hot weather? Take a water bottle with you, maybe sweetened. I often take tea with me-- as the caffeine is said to be good for muscle fatigue.

I found one thing fairly good for the muscle fatigue after walking. I took ice cream at a stopover and felt the entire body energised and the leg fatigue being all but over--maybe it was the nutrition that the leg muscles were crying out for.

Is your protein intake sufficient?

Another thing which I have found useful is a vibrator-massager, a small gadget held in the hand, which has a vibrating knob, which is applied to the muscles and there is a great relief from the muscle fatigue. Also the usual foot bath -- with water up to the knees in a hot bucket, brings instant relief on return home.

Sometimes I use the vibro-massager on the leg muscles before I go for a walk-- and find that the fatigue in the legs is delayed and I walk better.

All these may be symptoms of poor circulation in the legs. The heart should also be checked, as no doubt your doctor must have done already.

Please get your iron levels checked as well.

And from what has been said about Vitamin D -- a mega dose like 50,000 IU may help dramatically, if your doctor permits after getting a blood test done for Vitamin D levels.

Then again check whether you have a slipped disc which is compressing on any of the leg nerves -- and then you will be prescribed exercises for it.

If your doctor permits you may also try half-squats and lunges as exercises for the legs-- I noticed they give you a remarkable increase in strength, although for the first few days they may worsen the fatigue, and that is very discouraging.

Another method that I use is -- stop, walk, stop walk -- I walk with a friend and then we stop and converse and walk and stop and talk -- that way the legs get rest at frequent intervals.

I have noticed on many occasions that when I walk with some kind of problem weighing on my mind, I get fatigued much faster. And that when I walk with a cheerful frame of mind, telling jokes to my friend as I walk, I do much better. The pleasanter your thoughts while walking, the better you walk.

I also find a rock or something raised on the road and put one of my feet on it -- for a while, and then the other foot, in turns, and find that the fatigue is relieved for a while anyway.

Then again I take a banana before the walk and also a banana afterwards -- it supplies potassium.

They also say that you must take a low glycemic food -- one that is not too sugar producing -- before the walk , and maybe another carbohydrate while walking and then finally another low glycemic index food after the walk.

I do sincerely hope and pray that the leg fatigue goes away, as it is very discouraging, I know.

You have probably tried these various methods already, but I hope you get relief soon, by whatever other method your doctor advises.

Please type "Leg Muscle Fatigue on walking" in Google search and you will find many expert opinions with related research. I did that myself as well.

With Best wishes,
Yours,
Priya
(nathji)

edie26

nathji and rtsmiles,

I noticed the mention of leg fatigue (from nathji) and shin pain (from rtsmiles). I have been experiencing severe leg weakness for over a year in which I become extemely sick and nauseated if I don't stop and rest. I also started experiencing shin pain about six weeks ago if I stand longer than a few minutes. I have osteoposis (-5.3 spine, -3.8 hip) and have taken various meds (evista, fosamax, forteo) over the last 6 or 7 years. The leg weakness and sickness are keeping me from working (first grade teacher), and I really want to return to work. None of my doctors have been able to figure out anything to fix it yet. I have not heard anyone else mention this problem until I read your posts. Best wishes to you both!

nathji

Dear rtsmiles,

So glad I was of some help. Since the pain was even before the Fosamax, that is a reason for great relief, and it cant be the jaw bone problem associated with Fosamax, thankfully. Best of luck with the Forteo, about which I have little knowledge except that it is very expensive and very effective. But there are very knowledgeable people on this site and I am sure they will know more about it.

Best wishes for now and thanks,
Yours,
Priya

rtsmiles

Hello Priya,
WOW! Just amazed that this discussion thing really works! This is the first time I have ever joined any Internet group and really am looking forward to future notices and stories from osteoporosis people.
I had only been on Fosamax for 11 weeks, took myself off of it , and started Forteo 2 months ago. Seem to not have any problems with the Forteo except as noted previously I have so far unexplained cloudy urine (as noted in my first writing TO THIS site). No, I do believe the pain was even before the Fosamax. I honestly can't remember. Thanks again for writing back.

nathji

Dear rtsmiles,

Thanks for writing and letting me know of a similar problem in the legs in your case as in mine. Your fractures were frightening as also the fact that you can't walk for hours. I didnt have any fractures but I simply cant walk for long without getting fatigued in the legs.

Yes, my front teeth do appear to be somewhat loose, but there is no pain.Are you taking biophosphonate-- actonel or boniva or fosamax?

These drugs are known to give some trouble with the jaw bones, though they say it is very very rare. I do hope you have nothing like that. But if it is beginning, it may be time to stop the biophosphonates after consulting your doctor.

I believe this is the most alarming side effect of the biophosphonates-- but the loose and painful teeth may be due to other reasons also like gingevitis.

It may require a combination of your doctor and dentist to get at the root of the problem. I am relieved when you write that no one has associated the leg fatigue and aches to osteoposoris. Thank you for sharing.

Yours,
Priya

nathji

Dear Jacqueline,

Thank you for being a friend. My story was similar to yours, but much more tragic. No, I didn't sue the doctor, firstly because I was in a state of shock because of the suddenness of all that happened, and secondly because I blamed myself most of all for calling the doctor a second time, even when I could tell from his voice on the phone that he was drunk at his party. It was just the state of our absolute dependency on doctors that led to such a pass.

The episode relates to 1992. Years later the man died a horrible death from cancer of the esophagus, in which he could not swallow food or water. I spoke to him on the phone and forgave him. But it speaks for the fact that God's justice is still there beyond the courts of men. I am deeply touched by your concern and your friendship.
Yours,
Priya

Jacqueline

Dear Nathli -

I'm so sorry to hear your frightening story. Is it too late to try to sue the doctor?

rtsmiles

I was interested in your comment,Nathji,concerning your leg weakness. I notice pain sometimes in my shins since my diagnosis and various fractures in ankle and metatarsals. No one has said that the pain could be an effect of the osteoporosis. I used to be able to walk for hours. Also, my front teeth hurt. Anyone have the same feeling. They are also a bit moveable. Dentist says grinding of the teeth , perhaps, while I sleep. I never realized that I am doing this ?? thanks for any responses.

nathji

Dear Jacqueline,

It was indeed sad to hear your experience regarding your dear mother. I hope she was well after that. Leave it to such doctors to enjoy themselves in Florida.

Mine is much more tragic. My father had fever, due to which he could not swallow food or fluids. However he could still talk with an effort. The doctor who came to see him, said: "He is still conscious! You dont need to feed him intravenously. Here, let me show you how you can give him fluids." Saying this, he gave him water to drink, literally forcing it down his throat, while my father choked and gasped.

The doctor said, "There! Didnt I tell you he could still swallow fluids!"

It was Saturday night. After the doctor had come and gone, my father began to gasp for breath. His breathing rate went up frantically.

When I called the doctor on the phone, he was at a party, and he was obviously inebriated. He was annoyed, but he came over. And that was my greatest mistake.

His pride was injured when I told him the water may have gone into my father's lungs.

"Who says so? " he said, and then he forced him to drink another glass of water when he was barely conscious. "See? It has to be done properly!" he said before leaving.

My father died a few hours later, choking and gasping. Later the diagnosis was that he had been literally drowned by the forced water intake into his lungs. If he had been fed intravenously he would have survived the fever which was just influenza.

I have never forgiven myself since that time for calling the doctor--who was a professor in a reputed institute.

I can well understand the state of your mind and that of others who have suffered similarly at the hands of callous doctors.

I feel it is the "sense of power over life and death" that such doctors feel, which gives them the arrogance to treat patients as they will - not to mention their convenient 'forgetfulness' as in your dear mother's case.

Thank you so much for sharing the story.

Yours,
Priya

Jacqueline

Since we're discussing horror stories about doctors and hospitals, I'll share one. My mother was in the hospital and on a feeding tube. She had been on the tube for five days, during which time her doctor did not come to see her. I complained to a nurse, who assured me the doctor had never requested she be taken off the tube.

I decided to phone the doctor. Hold on to your hat.
Her doctor was vacationing in Florida. When I reached him on the phone, he gasped, "Oh my God,
I forgot about her!"

nathji

Dear huessysignoret,

Thank you for telling me of the numerous wrong diagnoses made in your case, which could have been fatal. As compared to yours , my Dexa scan pales into insignificance.

I dont know whether medical science is imperfect or whether doctors dont study their books as well as they should, or whether they are simply callous.

However we are alive today because of those good doctors who save us in the nick of time, when the incompetent ones fail.

I wish you the best of luck for the future and hope you get the best doctors and labs this time! Or better still not need them at all!

Thank you for replying and also for sharing your invaluable experiences.

Yours,
Priya

huessysignoret

Actually, Priya, mistakes are made in labs all the time, not just with DEXA machines. I was recently turned away from an emergency room with a diagnosis of "nothing wrong." Actually, I had a severe intestinal blockage which required emergency surgery a few hours later. I was also diagnosed with "dementia," when the problem was a drug that was sending me into renal failure. Another time, my husband took me to an urgent care facility because I was almost incoherent and extremely weak. They did some tests but sent me on to a doctor with whom I'd already made an appointment. She correctly diagnosed an intestinal illness that is potentially lethal, and I was hospitalized for a week. When I walked back into my house, I got a call from the urgent care center cheerfully informing me that all my tests were negative and I was just fine. I could go on and on, but I suspect anyone who's had medical problems has horror stories to tell. That's why it's so important to ask questions, do your own research, and take control of your own health care. But, I know, I'm preaching to the choir.

nathji

Dear Char42,

Thank you for your illuminating reply. I thought this business between doctors and medical representatives was peculiar only to where I live. But it appears people have similar tendencies in all parts of the world. I am glad you got the free biophosphonates eventually-- and the only question to remain would be whether these were at all necessary in the first place!

The med representative in my case, who professed to "healing humanity" disappeared as soon as I told him I could not afford the Forteo! They didnt have pizza parties here -- only tea and cake!! But I doubt whether the tea and cake materialised because the Forteo deal did not go through-- which would have brought them the equivalent of $ 10,000!

Yours,
Priya

Char42

Hey Nathji
"common practice to see some medical practitioners working in cahoots with drug companies". That has been an issue in the States and I have seen adverse newspaper articles about that subject. Some Doctors like the free meds from the drug reps for their patients that cannot afford medications. I changed clinics, as I had to wait behind drug reps as long as 2 hours past my appointment. Wish I had been invited to the pizza parties, as I have witnessed pizza brought into the Doctors office. Another insult, I had to sit and smell it while hungrily waiting for my appointment. In 2006/2007 I did get some free Bisphosphonates.

nathji

Dear Pika B,

Thank you so much for telling me about the ultra sound heel scan. I believe they have something like that in some clinics here where they take an ultra sound of the hand. I believe you are right, there ought to be some similarities in the results. I will certainly try it out whenever I can find such clinic.

Thank you again for your helpfulness.
Yours with regards,
Priya

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