Osteoporosis

February 20, 2005

The parathyroid hormone and also Vitamin K2 are very important in

maintaining and restoring bone mass.

Kelley

From: " alecusielena " <alecusielena@...>

Sent: Monday, January 24, 2005 10:48 AM

Subject: OSTEOPOROSIS

If anyone has had success with treating OSTEOPOROSIS, I would

appreciate knowing your protocol or anything that you learned.

February 22, 2005

Along with Boron, Manganese, Calcium and Magnesium.

Phil

OSTEOPOROSIS

If anyone has had success with treating OSTEOPOROSIS, I would

appreciate knowing your protocol or anything that you learned.

.............................................

March 5, 2005

Osteoperosis is the loss of calcium from the bones. This can happen

by an acidic condition within the body so that osteoclasts break down

the bone matrix into calcium ions into the blood, the parathyroid

hormone activates this. Now lots of estrogens slow down this process

which is what the whole HRT thing is about, But Progesterone

activates osteoblasts which lay down the new bone structure . If

someone is in fight or flight mode their adrenals will produce

cortisol which can occupy the same dna recepter site as progesterone,

so therefore tell the cell to stop doing things or to shut down. When

the adrenals are not over burdened they will turn DHEA into

progesterone with asistance of B6, B12 and Broccoli( unable to

remember the precise ingredient)Then the bones will increase in

density. Calcium supplementation will help yes but it is not normally

a problem with calcium deficiency it is the adrenals and progesterone.

Dr Lee's lectures regarding hormones and progesterone are very

interesting regardin this subject and many more.

Steve

>

> If anyone has had success with treating OSTEOPOROSIS, I would

> appreciate knowing your protocol or anything that you learned.

March 15, 2005

Trudy,

I was diagnosed with Osteoporosis in 2000. Somewhat rare for men, this was

due entirely to many years of Pred. I went on weekly Fosamax and was

pronounced 100% normal on a bone scan last year. These new bone loss drugs

really work!

Jim

Re: ASA desensitization, Trudy

Bill...I had severe anaphylaxis from aspirin and then nsaids. So far

I have been told by the ENT's at Cleveland Clinic and U of M Medical

Center Ann Arbor, that I am NOT a candidate. I wish I was as it

sounds like it might take the place of prednisone in some patients.

I just got the results back from my bone density. I was hoping I

would be one of the lucky ones but the damage has been done by the

daily/yearly use of prednisone and now I am starting on Actinol for

bone loss. I also would love to take daily asa for heart protection

and sometimes pain relief. I do believe they can " cover " me like

they do when I get CT Scans with dye (I am allergic to the dye) and

let me go through the desense, but I keep getting a big no way.

Trudy.

Trudy, Thanks for the quick response. So, I am curious to

know...did you go thru the dsa program?

March 16, 2005

Dear fabrizeO,

Hi, I'm , part of the conversation on osteoporosis. Something you said

brought back a memory of a conversation with my Bone doc. He had asked how much

exercise I got as a child, I replied that I was very active till age 13 when the

scoliosis was found, and then once diagnosed I was no longer allowed by the

school to participate in athletics in school or gym for fear I might " Hurt

Myself " . They probably were affraid of being sued. After surgery at fourteen, I

was never allowed to do gym or sports. My Doc said that bones gain strenght by

being used hard, a lot of activity in those teen years are essential for good

bone developement, and that maybe a reason my bone density is not good. As a

young adult I was more active, I was away from my parents and felt

industructable, so I worked in restaurants, did heavy lifting, and did sports.

Maybe those years of being treated like a gimp at school really did me some harm

all these years later.

Colorado Springs

osteoporosis

Hi everyone,

My name is Fabrizio and I've been a lurker for a while. I

saw the posts about osteoporosis and thought I should add info about my

experience.

I am 40 years old and had my scoliosis surgery back when I was 16. I

have a Harrington rod with a fusion from my upper spine (I don't which

vertebrae) down

to L3. I'm an editor and workk toomuch at a desk in front of a computer so I

get all kinds

of neck pains and nerve tingling if I don't get up and move around frequently.

I had a bone density test a couple of years ago (to get a baseline)

and learned that I had osteoporosis. I was really frustrated with some of the

doctors I saw

who didn't seem concerned at the osteoporosis at my age. I finally saw a

rheumatologist who put me on fosmax (70 mg/week). I was told to walk a lot to

build my

bone density, but since I was already walking 3 to 4 miles a day, that didn't

seem to be

very helpful. I found a great Pilates studio in D.C. with well-trained

instructors who were

willing to work individually with me. I do a lot of abs and low back

strengthening exercises

every day and have a session at the studio every week. At my two year dexa

scan, my low

spine was now just osteopenic and I had improvements in my wrist and hip as

well. My

flexibility has improved tremendously as well and I have been able to ease

neck and

back aches very quickly.

My rheumatologist said that scoliosis is definitely a risk for

osteoporosis, partly because of the immobility of our fused spines and

possibly because of

problems with our bones that may be related to the scoliosis itself. I've read

some

abstracts that suggest that low bone density can be an indicator for scoliosis

in young

girls/adolescents. There are theories relating to various brain chemicals that

may be a

cause of the scoliosis. there doesn't seem to be much research on it in the

US, and there is

virtually no research in the osteoporosis field dealing specifically with AIS

as a cause. I

think the fall 2004 report at HHS mentions scoliosis as a possible cause but

that is the

extent of its mention in the 100+ page long report.

I get frustrated at the lack of research into our problems from our

surgeries and at the fact that a dexa isn't especially reliable when there is

metal

instrumentation near the area where the scan is being taken.

Has anyone ever thought about organizing a group (modeled after

breast cancer survivor organizations) to push formore research and funding.

I'd be

interested in working on such an organization if others are interested. The

other scoliosis

groups seem to be focused more on people facing surgery or exploring treatment

options.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

October 7, 2005

FYI. sharron fuchs dc

From: CD SUMMARY [mailto:Cd.Summary@...] Sent: Friday, October 07, 2005 9:34 AMOHD@...Subject: Osteoporosis

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November 19, 2006

Hi

Congratulations! Had tried emailing you last year just checking on

you. So that's where you've been!

Anyway, I've had osteoporosis for years. It's not just an age thing,

it's also an immobility result. Other than being careful about moving

to avoid breaking something it's not a big deal. If you 'almost'

have it you should already be on calcium + vitamin D. I've taken

Fosamax, then Boniva. Neither are too bad. The biggest problem I've

had is remembering to take it. It's to be taken with water at least

30 minutes before breakfast. Good thing it's only once a month.

November 19, 2006

/ /I take Boniva.

Lori

LRN617 wrote:

>

> Hi,

>

> I'm . Many have you met me before. I was in this group before. I

> was very busy this year. I got married to someone I met who was in this

> group, at the time. His former wife (deceased)had SMA; he's able-

> bodied. Anyone, things are going great with us.

>

> Now, on to my health concern. I'm 55 and last week, my doctor told me

> that I almost have osteoporosis. Does anyone here (with SMA) have it

> and what are you doing for it? I'm seeing my doctor tomorrow. I do not

> want to take medication. I'm thinking about taking calcium supplements.

>

November 19, 2006

Hi ,

I was recently diagnosed. I have osteoporosis pretty

bad according to the test results, but luckily have

not had any fractures yet and do not feel the effects

as far as I know. I am 38 years old and have a form of

Muscular Dystrophy.

A good calcium supplement plus Vitamin D would be

important for you, as well exercising if you can,

especially strength training. According to my

nutritionist, most of the calcium supplements on the

market are not that good. You might want to see a

nutritionist. Eating calcuim rich foods and drinking

milk and orange juice can help, but supplements are

the best way to get these vitamins.

I will start a medication soon, but I don't know which

one yet.

Dina

--- cenlared <cenlared@...> wrote:

> Hi

> Congratulations! Had tried emailing you last year

> just checking on

> you. So that's where you've been!

>

> Anyway, I've had osteoporosis for years. It's not

> just an age thing,

> it's also an immobility result. Other than being

> careful about moving

> to avoid breaking something it's not a big

> deal. If you 'almost'

> have it you should already be on calcium + vitamin

> D. I've taken

> Fosamax, then Boniva. Neither are too bad. The

> biggest problem I've

> had is remembering to take it. It's to be taken

> with water at least

> 30 minutes before breakfast. Good thing it's only

> once a month.

>

________________________________________________________________________________\

____

Sponsored Link

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www.Classesusa.com

November 20, 2006

Here are some links for more information:

http://www.niams.nih.gov/bone/hi/calcium_supp.htm

http://www.niams.nih.gov/bone/hi/bone_exercise.htm

More for people without a neuromuscular disease

Dina

--- Lori <those2@...> wrote:

> Umm, strength training?

>

> Dina Abramson wrote:

> >

> > Hi ,

> > I was recently diagnosed. I have osteoporosis

> pretty

> > bad according to the test results, but luckily

> have

> > not had any fractures yet and do not feel the

> effects

> > as far as I know. I am 38 years old and have a

> form of

> > Muscular Dystrophy.

> >

> > A good calcium supplement plus Vitamin D would be

> > important for you, as well exercising if you can,

> > especially strength training. According to my

> > nutritionist, most of the calcium supplements on

> the

> > market are not that good. You might want to see a

> > nutritionist. Eating calcuim rich foods and

> drinking

> > milk and orange juice can help, but supplements

> are

> > the best way to get these vitamins.

> >

> > I will start a medication soon, but I don't know

> which

> > one yet.

> >

> > Dina

> >

> > --- cenlared <cenlared@...

> <mailto:cenlared%40>> wrote:

> >

> > > Hi

> > > Congratulations! Had tried emailing you last

> year

> > > just checking on

> > > you. So that's where you've been!

> > >

> > > Anyway, I've had osteoporosis for years. It's

> not

> > > just an age thing,

> > > it's also an immobility result. Other than being

> > > careful about moving

> > > to avoid breaking something it's not a big

> > > deal. If you 'almost'

> > > have it you should already be on calcium +

> vitamin

> > > D. I've taken

> > > Fosamax, then Boniva. Neither are too bad. The

> > > biggest problem I've

> > > had is remembering to take it. It's to be taken

> > > with water at least

> > > 30 minutes before breakfast. Good thing it's

> only

> > > once a month.

> > >

> >

>

__________________________________________________________

> > Sponsored Link

> >

> > Mortgage rates near 39yr lows.

> > $510k for $1,698/mo. Calculate new payment!

> > www.LowerMyBills.com/lre

> >

>

________________________________________________________________________________\

____

The all-new beta

Fire up a more powerful email and get things done faster.

http://new.mail.

November 20, 2006

Hi All,

Some years ago June Price did quite a bit of research on osteoporosis for her

publication called Living SMArt. She interviewed a number of doctors and read

articles etc. Her article can be summarised by saying that

1) anyone who is immobile (ie. using a wheelchair) will inevitably develop

osteoporosis over time

2) there is nothing you can do about it

Nature has designed our systems so that our bones are as only as heavy as is

needed for the amount of strain put on them. If the bones are not strained

regularly, they will inevitably loose bone mass. The only way to strain your

bones is to do physical excercise. This is clearly seen in astronauts whose

bones become very brittle since there is no gravity and consequently little

strain on the bones and muscles in space.

We the wheelchair users are much like astronauts in that our bones are strained

very little. So the bone become very brittle and are broken easily.

For anybody to retain the bone mass or increase it, you really need a lot of

weight bearing excercise. Swimming is not enough, for instance. Walking or

jogging would be good. If you cannot walk or run, then forget it.

According to the experts interviewed in June Price's article, even supplements

don't really help. The substances don't get into your bones because your bones

think they don't need to be any stronger.

But the good news is that osteoporosis is not all that dangerous and you can

live with it. All you have to do is to be fortunate enough not to break your

bones. So be careful!

If you are wheelchair-bound, you are not going trip on anything, so you have

already eliminated one danger. Teach proper transfer skills to all your

personal care assistants so they don't drop you. Keep your safety belt on. Have

your bed adjusted to the best height so that it is as easy as possible to help

you transfer. If in hospital, mention osteoporosis to the staff there so they

know to be careful. Etc.

Just a few hints from an old hag with SMA

-Taya

from Finland

Re: Re: Osteoporosis

Here are some links for more information:

http://www.niams.nih.gov/bone/hi/calcium_supp.htm

http://www.niams.nih.gov/bone/hi/bone_exercise.htm

More for people without a neuromuscular disease

Dina

--- Lori <those2@...> wrote:

> Umm, strength training?

>

> Dina Abramson wrote:

> >

> > Hi ,

> > I was recently diagnosed. I have osteoporosis

> pretty

> > bad according to the test results, but luckily

> have

> > not had any fractures yet and do not feel the

> effects

> > as far as I know. I am 38 years old and have a

> form of

> > Muscular Dystrophy.

> >

> > A good calcium supplement plus Vitamin D would be

> > important for you, as well exercising if you can,

> > especially strength training. According to my

> > nutritionist, most of the calcium supplements on

> the

> > market are not that good. You might want to see a

> > nutritionist. Eating calcuim rich foods and

> drinking

> > milk and orange juice can help, but supplements

> are

> > the best way to get these vitamins.

> >

> > I will start a medication soon, but I don't know

> which

> > one yet.

> >

> > Dina

> >

> > --- cenlared <cenlared@...

> <mailto:cenlared%40>> wrote:

> >

> > > Hi

> > > Congratulations! Had tried emailing you last

> year

> > > just checking on

> > > you. So that's where you've been!

> > >

> > > Anyway, I've had osteoporosis for years. It's

> not

> > > just an age thing,

> > > it's also an immobility result. Other than being

> > > careful about moving

> > > to avoid breaking something it's not a big

> > > deal. If you 'almost'

> > > have it you should already be on calcium +

> vitamin

> > > D. I've taken

> > > Fosamax, then Boniva. Neither are too bad. The

> > > biggest problem I've

> > > had is remembering to take it. It's to be taken

> > > with water at least

> > > 30 minutes before breakfast. Good thing it's

> only

> > > once a month.

> > >

> >

>

__________________________________________________________

> > Sponsored Link

> >

> > Mortgage rates near 39yr lows.

> > $510k for $1,698/mo. Calculate new payment!

> > www.LowerMyBills.com/lre

> >

>

__________________________________________________________

The all-new beta

Fire up a more powerful email and get things done faster.

http://new.mail.

November 20, 2006

Taya,

Thank you for this. My research brought me to the same conclusions.

Signed,

Another old hag with SMA...lol

>

> Hi All,

>

> Some years ago June Price did quite a bit of research on

osteoporosis for her publication called Living SMArt. She interviewed

a number of doctors and read articles etc. Her article can be

summarised by saying that

> 1) anyone who is immobile (ie. using a wheelchair) will inevitably

develop osteoporosis over time

> 2) there is nothing you can do about it

> Nature has designed our systems so that our bones are as only as

heavy as is needed for the amount of strain put on them. If the bones

are not strained regularly, they will inevitably loose bone mass. The

only way to strain your bones is to do physical excercise. This is

clearly seen in astronauts whose bones become very brittle since

there is no gravity and consequently little strain on the bones and

muscles in space.

>

> We the wheelchair users are much like astronauts in that our bones

are strained very little. So the bone become very brittle and are

broken easily.

>

> For anybody to retain the bone mass or increase it, you really need

a lot of weight bearing excercise. Swimming is not enough, for

instance. Walking or jogging would be good. If you cannot walk or

run, then forget it.

>

> According to the experts interviewed in June Price's article, even

supplements don't really help. The substances don't get into your

bones because your bones think they don't need to be any stronger.

>

> But the good news is that osteoporosis is not all that dangerous

and you can live with it. All you have to do is to be fortunate

enough not to break your bones. So be careful!

>

> If you are wheelchair-bound, you are not going trip on anything, so

you have already eliminated one danger. Teach proper transfer skills

to all your personal care assistants so they don't drop you. Keep

your safety belt on. Have your bed adjusted to the best height so

that it is as easy as possible to help you transfer. If in hospital,

mention osteoporosis to the staff there so they know to be careful.

Etc.

>

> Just a few hints from an old hag with SMA

>

> -Taya

> from Finland

>

November 26, 2006

I take Fosamax for 3 years now.

Camilla

-- In , " LRN617 " <Aunt617@...> wrote:

>

> Hi,

>

> I'm . Many have you met me before. I was in this group before. I

> was very busy this year. I got married to someone I met who was in

this

> group, at the time. His former wife (deceased)had SMA; he's able-

> bodied. Anyone, things are going great with us.

>

> Now, on to my health concern. I'm 55 and last week, my doctor told me

> that I almost have osteoporosis. Does anyone here (with SMA) have it

> and what are you doing for it? I'm seeing my doctor tomorrow. I do

not

> want to take medication. I'm thinking about taking calcium

supplements.

>

November 29, 2006

Hi, I am Lucian, 31, SMA3. Few months ago I was diagnosed with

osteoporosis, 2.5-3 level. I had deep pains on my hips over nights.

Doctor prescribed me FOSAMAX and Alpha D3 pills. Osteoporosis is

inevitable for sedentary people.

Gratulations for your marriage.

Regards,

Lucian

>

> Hi,

>

> I'm . Many have you met me before. I was in this group

before. I

> was very busy this year. I got married to someone I met who was in

this

> group, at the time. His former wife (deceased)had SMA; he's able-

> bodied. Anyone, things are going great with us.

>

> Now, on to my health concern. I'm 55 and last week, my doctor told

me

> that I almost have osteoporosis. Does anyone here (with SMA) have

it

> and what are you doing for it? I'm seeing my doctor tomorrow. I do

not

> want to take medication. I'm thinking about taking calcium

supplements.

>

November 29, 2006

Hi.

I was diagnosed with osteopenia a few years ago when I had my bone density test.

Apparently, Osteopenia is a condition prior to an on it's way to osteoporosis.

For the first time in my life, I am now experiencing lower back pain and hip

pain. I expect I now have full blown osteoporosis. I also do not want to take

the medications available. I have heard some horror stories about the side

effects. I did begin a calcium supplement and I also drink a delicious shake

daily called Complete. It provides half the calcium needed for the day so it is

a great help. It also provides lots of added nutrition. If you want to know

more, please E-mail me directly. mbc543@...

Peace to You,

Beth

Osteoporosis

Hi,

I'm . Many have you met me before. I was in this group before. I

was very busy this year. I got married to someone I met who was in this

group, at the time. His former wife (deceased)had SMA; he's able-

bodied. Anyone, things are going great with us.

Now, on to my health concern. I'm 55 and last week, my doctor told me

that I almost have osteoporosis. Does anyone here (with SMA) have it

and what are you doing for it? I'm seeing my doctor tomorrow. I do not

want to take medication. I'm thinking about taking calcium supplements.

December 4, 2007

according to the National Osteoporosis Society website, 1 in 2 women and 1 in 5 men are at risk of fractures and most of these are due to osteoporosis. Risk then seems pretty high that we can have osteoporosis without doing anything else like taking thyroxine! Im doing some work around osteoporosis for a course so will bear this in mind as i would be interested to see the evidence - sounds like it would be a difficult bit of research to undertake if so many people are at risk already - how did they prove the link to thryoxine?!!

Gill

December 4, 2007

This website was quite good Gill, hope it helps you in your research.

http://www.healthy.net/scr/article.asp?Id=3336

Luv nne

Risk then seems pretty high that we can have osteoporosis without doing anything else like taking thyroxine! Im doing some work around osteoporosis for a course so will bear this in mind as i would be interested to see the evidence

AOL's new homepage has launched. Take a tour now.

December 4, 2007

thanks,

Gill

Re: osteoporosis

This website was quite good Gill, hope it helps you in your research.http://www.healthy.net/scr/article.asp?Id=3336Luv nne

Risk then seems pretty high that we can have osteoporosis without doing anything else like taking thyroxine! Im doing some work around osteoporosis for a course so will bear this in mind as i would be interested to see the evidence

AOL's new homepage has launched. Take a tour now.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.13/1170 - Release Date: 04/12/07 10:52

December 5, 2007

Hi Gill,

You may find it useful to your research to go on the main hypo board from Http://www.thyroid.about.com( click on

forums- it’s the top one). And contact Fred as he has experience with

this- he is in the USA so this may be out of your research area. He had problems on

T4 and is now OK on Armour. Seems that the calcitonin in Armour may be vital

to some of us.

according to the National

Osteoporosis Society website, 1 in 2 women and 1 in 5 men are at risk of

fractures and most of these are due to osteoporosis. Risk then seems

pretty high that we can have osteoporosis without doing anything else like

taking thyroxine! Im doing some work around osteoporosis for a course so

will bear this in mind as i would be interested to see the evidence - sounds

like it would be a difficult bit of research to undertake if so many people are

at risk already - how did they prove the link to thryoxine?!!

Gill

December 5, 2007

Hi , thanks for the info - might be out of area but may be useful so I will have a look and thanks very much.

Gill

December 20, 2007

, unfortunately bone loss can be a major sequelae of bypass

surgery. I am much older than you are (57) and have severe osteopenia.

I am sure part of that is due to having the MGB. I took Fosamax for a

few months and it caused incredible gastric irritation and reflux when

I had none prior to that. Dr. R thought I had an ulcer. It took months

after stopping the Fosamax to get rid of the symptoms. If you have to

take a medication like that, I would personally suggest Boniva as you

only have to take it once a month. On the other hand, you could greatly

increase your vitamin D (take vitamin D3). I took 6000 iu a day for D3

for 3 months then cut back to 4000 a day for maintenance. Vitamin D

helps you absorb your calcium. I also would suggest instead of just

taking a calcium supplement, take a " bone building " supplement that

includes boron and silica. You can find that at any health food store

or I order my vitamins from www.swansonvitamins.com. Increase your

exercise to stress your bones so your body will slow the bone loss and

hopefully build more bone mass. Have your BMD repeated in a year and

see what it shows. I hope this info helps.

Shellie - Kansas RN

>

> hi everyone,

> i was just told today that i have osteoporosis!!! i'm 27 years

> old!!!!!! i had a bone scan as part of my normal post op check up. i

am

> glad that i did. has anyone else delt with this post op? have any of

> you taken fosamax? i would like to talk with you if you've had to go

> through this too. thanks, susan

>

> susan kiefer

> bay city mi

> 11/30/04

> dr. r and d

> 258/152

>

November 30, 2008

Hi Jolene,

This is what I worry about. Machines are not able to read curved spines, so

that part cannot be reported. But I've been told that the hip bone is a

good indicator of osteoporosis in the spine. Also, when having an

abbreviated test, the heelbone is measured. That apparently is another

place that indicates. But I'm now worried, because your scans for 12 yrs

showed no porosis!

Lida in London

Re: Re: body image

On Nov 28, 2008, at 10:15 PM, Buttonjoaol (DOT) <mailto:Buttonjo%40aol.com> com

wrote:

> , Sara, and Lida....

>

My spine has just been giving me a painful time the last 10 years. My fusion

in 1960 was too short and after being in denial I needed another fusion I

finally agreed 2 years ago. Unfortunately, I waited too long and I have

osteoporosis so surgery had to be stopped short. That's is why I'm an

advocate for women to not wait until they are 50 to have it. Learn from me.

Osteoporosis did not show on any of my bone density scans for the last 12

years. The machines are not calculated for curved spines so the laser does

not read the bone accurately.

>

> Jolene

>

November 30, 2008

I'm glad this subject has been brought up. Do any of you out there

have osteoporosis that have had fusion? I can't take calcium but I

get plenty of yogurt and cheese to eat. I've really thought about so

many times what happens with all the metal if you get osteoporosis. I

getted scared sometimes thinking about it but I try and put it away

especially now that I don't have insurance for now. Thanks, Dereise.

>

> > , Sara, and Lida....

> >

> My spine has just been giving me a painful time the last 10 years.

My fusion

> in 1960 was too short and after being in denial I needed another

fusion I

> finally agreed 2 years ago. Unfortunately, I waited too long and I

have

> osteoporosis so surgery had to be stopped short. That's is why I'm

an

> advocate for women to not wait until they are 50 to have it. Learn

from me.

> Osteoporosis did not show on any of my bone density scans for the

last 12

> years. The machines are not calculated for curved spines so the

laser does

> not read the bone accurately.

> >

> > Jolene

>

> >

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Osteoporosis

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