Re: Re: Looking for EDSers with Osteoporosis

[Guest guest]

I've severe osteo in my hips, but surprisingly normal bone scans otherwise.

Nothing has helped enough to replace the missing bone, and I also didn't

tolerate the trials of any of those products either, . Which could be a

blessing of sorts, as during further reading, I'm seeing articles that the

replacement bone may be vastly inferior and can lead to easier fracturing over

time.

I've no choice left but hip replacement on the right side...and to try to make

the left last as long as possible.

Liza

[Guest guest]

Barb,Lana,

I have severe osteoporosis, I just had my second dexa scan two weeks ago, my

last one in March of 2002, my spine went from -2.7 to -3.0. Hips are bad

too! Now on Calcitonin nasal spray. Couldn't tolerate the Fosamax, the

Actonel or the Forteo.

Love, S.

Re: Looking for EDSers with Osteoporosis

> I have it Barb, will correspond with her.

>

> Love Lana

>

>

>

> > I have been asked to find people with EDS and Osteoporosis to

> correspond with/answer questions for another off-list EDSer with

> Osteoporosis. If you have both these diagnoses and are willing to

> write to this person, email me and I will send you her contact info.

> >

> > -Barb

> >

> >

[Guest guest]

Barb,Lana,

I have severe osteoporosis, I just had my second dexa scan two weeks ago, my

last one in March of 2002, my spine went from -2.7 to -3.0. Hips are bad

too! Now on Calcitonin nasal spray. Couldn't tolerate the Fosamax, the

Actonel or the Forteo.

Love, S.

Re: Looking for EDSers with Osteoporosis

> I have it Barb, will correspond with her.

>

> Love Lana

>

>

>

> > I have been asked to find people with EDS and Osteoporosis to

> correspond with/answer questions for another off-list EDSer with

> Osteoporosis. If you have both these diagnoses and are willing to

> write to this person, email me and I will send you her contact info.

> >

> > -Barb

> >

> >

[Guest guest]

Thanks Liza!

Do you have anymore info you can send me?

ngsamuelson@...

Thanks, S.

Re: Re: Looking for EDSers with Osteoporosis

> I've severe osteo in my hips, but surprisingly normal bone scans

otherwise.

> Nothing has helped enough to replace the missing bone, and I also didn't

> tolerate the trials of any of those products either, . Which could

be a

> blessing of sorts, as during further reading, I'm seeing articles that the

> replacement bone may be vastly inferior and can lead to easier fracturing

over time.

> I've no choice left but hip replacement on the right side...and to try to

make

> the left last as long as possible.

> Liza

>

>

>