Bone Scan

[Guest guest]

Dear C.,

If is going in for a bone scan, I believe it will be a painless

procedure -- non-invasive. If he is going in for a bone marrow aspiration,

that is another matter. Grace had a bone marrow aspiration in, I think,

February, when some of her blood counts went askew. Yes, they gave her

something so she would " forget " the procedure, but she remembers a little of

it. I stayed in the room with her and put my cheek next to hers (the one on

my face that is!) and held her head up (they extract it from the lower spine)

and sang slow, soft little songs... it was tough, but I'm the type of person

who can do that kind of thing. My husband, on the other hand, was mush. He

stood in the corner weeping and helpless. He is stronger than me in so many

ways, but not this way. You'll need to decide whether you would be more

helpful in the room or not. It has very little to do with whether you're a

good mother or not... it's just how different people react to stressful

situations. I hope that all goes well with and I'll be thinking of you

and your family.

N.

[Guest guest]

Jayne,

My neck has settled down some since last week, thankfully. By my estimation,

my involvement is in my neck, lumbar spine, right hip, right knee, right hand

(one sausage digit) and right shoulder. From what I've heard and read, there

really isn't any " typical " PA, it's so individual. That's one of the reasons

why I was so surprised that the nurse made reference to anything being

" typical " .

Anyway, I called the RD's office this morning to keep them apprised of what's

happening. The nurse seemed surprised my primary doc an inflammatory

response in my back. She was oh-so-polite and said she would pass the update

along to the doctor.

So I suppose this is good, getting some action! I'm very curious to find out

what the bone scan turns up. Now I just have to figure out how my son is

going to be supervised while I'm being scanned, with my husband out of town

LOL.

Patty

<< My neck is involved...and so are my hips - and my diag is PA...??????

Infact, they are the only three things invoved - lower back,neck and

hips....when I question it not being normal..he says I also have AS he

thinks???? >>

[Guest guest]

I think I like my doctors bone scanning machine better, no injection and

only takes about 20 minutes. Right at her office!

Oh yeah, Hello to the family!

[Guest guest]

In a message dated 2/16/02 6:43:59 PM Pacific Standard Time, tdcc2000@... writes:

Harper....I think I had to take off my bra because of the hooks, but if you wear a sports bra, I don't think there would be a problem.

debby

Uh -- I don't wear a bra unless someone's going to be looking. They drive me crazy. I didn't need one until Prednisone. So, I choose clothing combination that will let me get away without one in most situtions. I've found a very soft pull-on cotton bra that isn't too annoying.

Harper

[Guest guest]

Harper, It's funny reading your bra attitude. I was the same way, anytime I could get away with it I was braless. Then after the transplant I had a tube in my chest for three years and I could not waer a bra; the outlet was exactly where the band would be located in the front between the breasts, I aquired alot of vests and always hade sure I was decent when I went to work etc.

When exercising I had to put a Large peice of duoderm over the tube opening to wear a sports bra, I also did this a couple of times when I got really dresses up and wanted to look nice.

Since July when the tubes were removed I LOVE to wear a bra it's amazing how good it feels to be supported after so long!

Funny how our attitudes change, it's been six months and I'm to the point where I come home from work and can't wait to get the darn thin off

Patty - Miami

-----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Saturday, February 16, 2002 10:37 PM Subject: Re: [ ] Bone scanIn a message dated 2/16/02 6:43:59 PM Pacific Standard Time, tdcc2000@... writes:

Harper....I think I had to take off my bra because of the hooks, but if you wear a sports bra, I don't think there would be a problem. debby Uh -- I don't wear a bra unless someone's going to be looking. They drive me crazy. I didn't need one until Prednisone. So, I choose clothing combination that will let me get away without one in most situtions. I've found a very soft pull-on cotton bra that isn't too annoying. Harper

[Guest guest]

Rusty-

You're right -- we all want thin hips. But not that kind. Doesn't sound like you had a very good dr.'s visit. I'm glad you treated yourself to some junk food -- always makes me feel better. Hope your thin hips and your cookie-injected knees aren't giving you too much trouble.

Diane (, 3, pauci)

[Guest guest]

Hi ,

I hope the knee injection gives you some good, long-lasting relief. Sorry to hear that you continue to have bone loss in your hips. Any word on whether they may be able to set you up for new ones? I remember one doc said no, he wouldn't do the surgery. I don't remember why, though (?). I'm happy you rewarded yourself afterwards, by going out for lunch. You deserved it! : )

We're under a flash flood warning here on Maui. For the first time in .... many, many months (or longer!) we had a thunder and lightning storm this morning. Very exciting. It woke me right up. Just as I got out of bed to go check on the kids, they were both getting out of their bedrooms and coming down the hall to my room. We went out on my balcony for a while to get a better view of the sky and the torrential rains but the thunder was so loud that we soon retreated. Then had to go downstairs to comfort all our birds, who were being quite vocal and enthusiastic. They were as excited as we were : ) Doesn't rain much around here.

Josh was sick. Caught his sister's cold. No wonder he was feeling so tired and worn out. I could tell something was up, before he showed any symptoms of it. He took it easy all weekend and had to miss school yesterday but he was feeling somewhat better today. Not totally yet, but the kids love going to school when it rains .... so off he went.

Me ... I'm doing alright. Currently re-decorating our upstairs bathroom. Have switched from a forest green color scheme and accessories, a real lush forest look, to a deep dark-blue-and gold-based sun, moon, and stars motif. It's gonna' so look nice : )

But right now, I've got to go drop off some POG juice and cookies for an art class party Kayla's having at school. I'll be back. And hopefully, will be able to post some more later : )

Stay Well,

Georgina

----- Original Message -----

From: A Morse

Well had me another bone scan Monday and the doctors said my hips werethining. Just what all the gals what to here, 'my you have thin hips' I also got me another injection of Hydrox cookie cream shot into my kneejoint, to replace the cartlidge. I wanted Butterscotch but she only had Vanila flavor to give me, so Isettled for that, with butter scotch topping. Really after wards I treated my self to Arbys' a 'Super Roast BeefSandwich' actually 2' sandwiches! and a medium Curly frie..

[Guest guest]

-

I've had 2 bone scans since my diagnosis of PA. Both showed lots of

" activity " or uptake of the radioactive tracer in all the places I told them

I was hurting. It's painless, pretty interesting, and the scans themselves

put me in mind of x-rays of Egyptian mummies in the British Museum! Be sure

you ask to see the finished product. It takes a lot of time since they have

to wait for the contrast material to be taken up by the bone, so plan on at

least a half day if not more. The last scan was of my feet because the

orthopedist just couldn't believe my left foot hurt as much as I said it

did. When the tech was running the scan she said, " Do your feet hurt? Left

one more than the right? Wow, it sure shows. " I lit up in my wrists, left

thumb, right index finger, SI joints, ankles and neck, too. The scans are

used along with x-rays to get a better idea of what's going on. Let us know

how yours turn out.

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[Guest guest]

I've had two bone scans over the last few years. In both cases, the scans

revealed that I had broken bones in my feet. The scans are much more detailed

than xrays and pick up damage that xrays often miss as they are much more

accurate. I have PA in many places, but have had it in my feet since I was a

teenager (I'm now 54) so it is my feet that have suffered the most damage.

's description of the procedure is spot on. You get injected with a

radioactive dye. After waiting an hour or so for the dye to work its way

through the system, the areas in question (in my case the feet) are scanned.

Bone damage shows up quite clearly on a tv monitor since the dye cannot travel

through bones where there is a break or a blockage.

Best of luck with your test,

Kathy

Has any one had a bone scan after your PA dx, and if so what were the results.

[Guest guest]

Thank you so much for everyone's input. What a great site this is, wish

I had found it sooner.

Will let everyone know the results (test is scheduled for this Monday).

kleebull (my name is , but since I've seen a few 's on the

board I thought I'd use my email name)

--

Lee (Bull) Suttle

kleebull@...

Richmond, California

http://www.kleebull.com/

================================================================================\

=

[Guest guest]

Debby,

I too have osteopenia. Because of the bleeds and kidney stones that I have had they do not want me on any treatment right now. I have a dexa scan yearly and there was not much worsening this past year so they want me to wait and watch. They mentioned the nasal spray to me but because I have had pretty bad nose bleeds also they don't want to do that either. All we can do is what you are doing. Weight bearing exercises as tolerated and follow your doctors advise. We are all in the same boat. We have to take the Prednisone and it makes the osteopenia worsen. Nothing to do but follow doctors orders and eat well. Sounds like you are doing that. It is alarming but unfortunately it's part of this crazy disease.

[Guest guest]

Hi Debby:

Sorry to here about the Diagnosis. Hope you don't have to go back on predisone. I am not familiar with the daignosis. Hope everything works out for you.

Take care.

Love, Gaynel

[Guest guest]

Thank you for writing about your Osteopenia.

You are so much worse off than I am! My heart goes out to all of you who

have the bleeds. I have never had one of those and pray that I never

will! As for the nose bleeds, I do have those occasionally. It is

funny, but one year before I was dx with AIH, I would have horrific nose bleeds

that caused me to have someone to come into my classroom and cover while I

would lie down in the Nurse’s office. Then, it seem, as quickly as

they came, they left! 15 months later, the AIH was dx.

I am going to use the nose spray and hope that it will help the

situation.

Debby

Re: [ ] Bone

scan

Debby,

I too have osteopenia. Because of the bleeds and kidney stones that I

have had they do not want me on any treatment right now. I have a dexa

scan yearly and there was not much worsening this past year so they want me to

wait and watch. They mentioned the nasal spray to me but because I have

had pretty bad nose bleeds also they don't want to do that either. All we

can do is what you are doing. Weight bearing exercises as tolerated and

follow your doctors advise. We are all in the same boat. We have to

take the Prednisone and it makes the osteopenia worsen. Nothing to do but

follow doctors orders and eat well. Sounds like you are doing that.

It is alarming but unfortunately it's part of this crazy disease.

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[Guest guest]

Thank you Gaynel. After the responses by

folks here, it seems that things are going to be OK. Thanks again.

I was dx with AIH July of 00.

Debby

Re: [ ] Bone

scan

Hi

Debby:

Sorry to here about the Diagnosis. Hope you don't have to go back

on predisone. I am not familiar with the daignosis.

Hope everything works out for you.

Take care.

Love, Gaynel

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[Guest guest]

I have osteoporosis (spine of a 60 year old and hips of a 70 year

old - I'm in my mid-40's), osteopenia in my hands...not due to

prednisone, but having been on hormone replacement for 20+ years.

Prednisone had zero effect on my AIH - LFT's did not lower at all.

I only take 100mg of Imuran daily and the LFT numbers have

dramatically decreased to high normal ranges, with the exception of

the alkaline phosphate which is still too high....going to a

hepatologist next month for his opinion.

I would ask if you could try Imuran or cyclosporin alone - without

Prednisone for a couple of months to see if it works.

For the osteo problems I take Fosamax once a week and calcium

supplements in a soft candy form (CVS brand or Viactiv) - they come

in flavors like chocolate and strawberry - they're really good!

Hope this helps - osteopenia does not have to become osteoporosis.

Sandy

[Guest guest]

Sandy, thank you for your input. Wow, you are in worse shape than am

I! At our lowest, we can always find others who are worse off! I

hope that doesn’t offend you, but I need to count my blessings that it is

not full blown osteoporosis! I am sure that you too have experienced this

that you have found people who are in worse condition that you are too.

Thank you for sharing. What is your osteo from? I took

hormones for close to 30 years too. I stopped several years ago because I

just didn’t like the research that was coming out. It was quite

frightening. Also, my GP was suggesting to women that unless they didn’t

have to have HRT, that it would be best to go off. It really wasn’t

doing anything for me anyway!

Currently, I am taking only 6MP for the AIH. It seems to be working

OK. I see the GI next month and will get results of the labs then when

she sends the slip so I can have them drawn! Hopefully my levels will

continue to stay down.

Good luck with your osteo..

debby

[ ] Re: Bone

scan

I have osteoporosis (spine of a 60 year old and hips

of a 70 year

old - I'm in my mid-40's), osteopenia in my

hands...not due to

prednisone, but having been on hormone replacement

for 20+ years.

Prednisone had zero effect on my AIH - LFT's did

not lower at all.

I only take 100mg of Imuran daily and the LFT

numbers have

dramatically decreased to high normal ranges, with

the exception of

the alkaline phosphate which is still too

high....going to a

hepatologist next month for his opinion.

I would ask if you could try Imuran or cyclosporin

alone - without

Prednisone for a couple of months to see if it

works.

For the osteo problems I take Fosamax once a week

and calcium

supplements in a soft candy form (CVS brand or

Viactiv) - they come

in flavors like chocolate and strawberry - they're

really good!

Hope this helps - osteopenia does not have to

become osteoporosis.

Sandy

[Guest guest]

Hi! I was also diagnosed with osteopenia - I was NOT prescribed anything

else besides physical / pool therapy. So many people I have spoken with are

surprised that I was not prescribed any supplements. I have been on pred.

as high as 40mgs every day & down to 5mgs. I am presently on 7mgs of

pred. due to a 'flare-up' or 'relapse' all I know is that I feel exhausted

again (not just wiped out). They also added Imuran. Best wishes.Take care,

Sue(from Ohio)

tdcc2000 wrote:

Bone scan

It is interesting how different threads come and go

here and how we pick and choose what is helpful to us.

Well, the bone scan thread came and went and of course

I didn’t pay any attention

to it and now I need some information from you all.

Yesterday I received the news that I have Osteopenia,

the precursor of osteoporosis. The doctor has prescribed a nasal

spray for me and has ordered me to take calcium. There was a marked difference between the scan I

had in early 2000 to the one done two weeks ago. My GP believes as do I,

that the prednisone is the culprit.

Now, I am doubling up on the weight bearing exercises

that I do with the hope that not only will it

help with the bone structure as well as the weight. I continue the elliptical

machine and that is helping me with my endurance.

My biggest fear is that should my LFT’s begin to rise, that

the doctor will put me BACK on prednisone. And if I do, what are my chances

of more damage to my bones? I suppose I need to address this with my GI.

My GI has told me that chances are very high that I would be put back on

prednisone eventually since very few can remain off the prednisone indefinitely.

Any other suggestions?

Debby

[Guest guest]

Sue, I am finding through these responses from different people, that

indeed the jury is out on the proper treatment for this osteopenia.

On another note, my GI just called me and I told her of the

diagnosis. Her words were…”I HOPE THEY DIDN”T PUT YOU

ON ANOTHER MEDICINE!” I knew she would say that. When I told

her of the nose spray, she calmed down. I laughed! Anyway, told her

that I had stopped another medicine and she was happy. Nothing better

than having a happy GI! LOL

Debby

Re: [ ] Bone

scan

Hi! I was also diagnosed with osteopenia - I was NOT

prescribed anything else besides physical / pool therapy. So many people I have

spoken with are surprised that I was not prescribed any supplements. I have

been on pred. as high as 40mgs every day & down to 5mgs. I am presently on

7mgs of pred. due to a 'flare-up' or 'relapse' all I know is that I feel

exhausted again (not just wiped out). They also added Imuran. Best

wishes.Take care, Sue(from Ohio)

tdcc2000 wrote:

It

is interesting how different threads come and go here and how we pick and

choose what is helpful to us.

Well,

the bone scan thread came and went and of course I didn’t pay any

attention to it and now I need some information from you all.

Yesterday

I received the news that I have Osteopenia, the precursor of osteoporosis. The doctor has prescribed a

nasal spray for me and has ordered me to take calcium. There was a marked difference between the scan

I had in early 2000 to the one done two weeks ago. My GP believes as do

I, that the prednisone is the culprit.

Now, I

am doubling up on the weight bearing exercises that I do with the hope that not

only will it help with the bone structure as well as the weight. I

continue the elliptical machine and that is helping me with my endurance.

My

biggest fear is that should my LFT’s begin to rise, that the doctor will

put me BACK on prednisone. And if I do, what are my chances of more

damage to my bones? I suppose I need to address this with my GI. My

GI has told me that chances are very high that I would be put back on

prednisone eventually since very few can remain off the prednisone

indefinitely.

Any

other suggestions?

Debby

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2. NO slamming of other members, advertising or

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Your use of

is subject to the

Terms of Service.

[Guest guest]

The osteoporosis is probably due to many factors - having had a

hysterectomy at 23, being on HRT for so long, the fact that I have

always barely tolerated drinking milk (I've never liked it).

My doctor took me off the hormones as I've had 3 or 4 strokes -

fortunately fully recovered with no lasting problems other than

short term memory problems and occasionally not being able to come

up with the right words.

Yes, I have come across others worse off than I am. A couple of

years ago my brother had autoimmune hemolytic anemia and almost

died. He lost almost all his red blood cells in 24 hours - took him

a half hour to cross the living room to call an ambulance.

Fortunately, it was diagnosed quickly enough to save his life.

Rather surprising since he lives in the woods in the middle of

nowhere (northern New Hampshire).

Autoimmune disorders are definitely prevalent in my immediate

family. My GI related a theory that autoimmune disorders are

genetically predisposed due to your parents being linked too close

genetically.

Out of 6 kids, only my brother and I share the exact same parents

and we are the only two with these medical problems. Both my

parents were Irish and French, and both families were from the same

areas of Ireland and France so it is very likely there was some

connection.

Sandy

[Guest guest]

I'm glad you said that. If it was me I'd be on the run from those long cajun legs chasing me over the river and through the woods... -dz-DIANE <jerzegirlinfl@...> wrote:

Thanks Jan!!!!! I cracked up when you wrote you were fixing to get your big ass back on the couch!!!!! ha ha LOL Hope you feel better girl!!!! ha ha Big Ass!!!!! he he

[Guest guest]

No doubt! It's the lightning bolts that come out of your eyes that scare me! -dz-Janet <jfw4359@...> wrote:

Hey I'm not going to no ER and I can stil kick butt even feeling like dog poop!!!!! LOL

[Guest guest]

I hear you. I am happy to be able to take care of my mom. The only problem is, she never wiped my wife's butt, if you know what I mean.... Don't get me wrong, my wife wants to help, too, but she doesn't have the depth of commitment that I do. It's just a little harder for her to accept. She is so proud of our new house, and it means so much to her that she could weep every time my mom puts another nick in the wall or dent in the door with her wheelchair. She'll come around, but she has to work on her acceptance a little bit more than I do. She doesn't have any parents. They were both gone by the time she was 16. -dz-Tammie <beachbrat5@...> wrote:

Hey Dave,These are the times when I believe God really tests us.Try to remember being a little half helpless boy and all the things that mom was there to do for you.It's reciprication time sweetie.I know it's very hard to do,but hey--she wiped your butt too.You have been given this special time,it won't last forever.I helped take care of my pop before he passed on in September.It wasn't always easy but when it's over you realize it was nothing at all compared to what they have given you in your life time.I pray for you and Diane.PEACE,PATIENCE,LOVE & JOY TO YOU,TAMMIEP.S.-------SEARS sells a mini steam cleaner for around $50.00......---In , Dave <dhz920@s...>

[Guest guest]

I'm sorry I was so harsh.Sometimes my brain overloads my mouth.I was

quite opinionated for someone without all the facts,Please accept my

apoligy.TammieHey Dave,

> These are the times when I believe God really tests us.Try to

> remember being a little half helpless boy and all the things that

mom

> was there to do for you.It's reciprication time sweetie.I know it's

> very hard to do,but hey--she wiped your butt too.You have been

given

> this special time,it won't last forever.I helped take care of my

pop

> before he passed on in September.It wasn't always easy but when

it's

> over you realize it was nothing at all compared to what they have

> given you in your life time.I pray for you and Diane.

> PEACE,PATIENCE,LOVE & JOY TO YOU,TAMMIE

> P.S.-------SEARS sells a mini steam cleaner for around $50.00......-

--

> In , Dave <dhz920@s...>

[Guest guest]

Don't feel bad, Tammie, there was nothing wrong with what you said and I wasn't offended by it. We can't be too thin-skinned around here. It's always a good reminder to remember the things our folks have done for us. The only posts we frown upon are mean-spirited attacks on each other and that has happened so rarely it hardly bears mentioning. That was good sound advice and we can never hear it too often -dz-Tammie <beachbrat5@...> wrote:

I'm sorry I was so harsh.Sometimes my brain overloads my mouth.I was quite opinionated for someone without all the facts,Please accept my apoligy.TammieHey Dave,> These are the times when I believe God really tests us.Try to > remember being a little half helpless boy and all the things that mom > was there to do for you.It's reciprication time sweetie.I know it's > very hard to do,but hey--she wiped your butt too.You have been given > this special time,it won't last forever.I helped take care of my pop > before he passed on in September.It wasn't always easy but when it's > over you realize it was nothing at all compared to what they have > given you in your life time.I pray for you and Diane.> PEACE,PATIENCE,LOVE & JOY TO YOU,TAMMIE> P.S.-------SEARS sells a mini steam cleaner for around $50.00......---> In , Dave <dhz920@s...>

[Guest guest]

Angie,

Were always here for you. I'm glad that you can get in Thursday, and

find out what's going on. Will keep you in my prayers, Tawny

>

> I finally got my bone scan scheduled. I go this Thursday then

> hopefully in two weeks I can see the doctor and find out what going

> on. Thanks for listening to me this past week whine.

> Thanks

> Angie