Re: Bone scan experiences

[Guest guest]

If it were me, I would welcome that proof that you already know exists. Bone

Scans &  MRI's show conclusively what is there- and what is not there. I would

also make sure that the people performing the scan are made aware that you have

had a recent, large injection to calm the inflammation. Embrace it would be my

thought.

 

Good luck-- in SC

 

I know that none of you are doctors but I thought I might be able to get some

helpful info. Just nervous about further bad treatment by PMU doctors if they

don't get conclusive results. They have some power in the part of Australia

where I live to influence my future treatment/access to pain medication (which

is government regulated) if/when I need it.

Hate having to play " games " with doctors but I want to protect myself as much as

possible.

[Guest guest]

Thanks

I am glad, in lots of ways, to be having it done. I guess I just want to be as

" armed " with information as possible as the results of this scan could have some

very real implications for my treatment in the future.

In South Australia (the state where I live) the government body that authorises

certain prescriptions can intervene and prevent chronic pain sufferers from

being prescribed pain medication. They are able to do this without consultation

with the prescribing doctor and there is even a current court case where a woman

suffering from an autoimmune disease is having to take the state government to

court to be allowed enough pain relief to provide her with any quality of life.

She has been prevented from having pain relief against her doctors

wishes/advice.

This same government board has also forced chronic pain sufferers into a drug

treatment program alongside heroin addicts, against the wishes of their doctors

with the threat that they would be entitled to no pain relief if they did not

comply.

The pain management doctors interact with this government board so the results

of my scan could have very real implications for my quality of life should I

require ongoing pain relief (as I do at this time).

I would like to be 100% confident that the bone scan results will prove what we

already know but I do know of other RA sufferers who have had problems with bone

scan results and therefore am slightly nervous.

I just wanted to make it clear that I am not apprehensive without cause. Without

these factors I would feel very happy to be having the bone scan done and very

interested in the information it can provide.

Ali

[Guest guest]

Ali,

There are many types of nuclear scans. Do you know exactly which one?

Generally, in the United States, if something other than plain x-rays

is indicated, MRI seems to be the preferred imaging method for early

RA diagnosis and detection of early changes. MRI would probably be

used more than conventional x-rays if cost weren't an issue.

Here is the link to a recent article about imaging which I posted a

few days ago that might help you:

http://jnm.snmjournals.org/cgi/content/full/51/12/1937

Not an MD

On Tue, Apr 5, 2011 at 8:53 AM, Alison Aston <astoali@...> wrote:

> Hi everyone

>

> I discussed with pain management docs last week that they would like me to

have a full body nuclear bone scan. I understood from the conversation that they

would send the recommendation to my Rheum and we would organise it at some point

in the future. Imagine my surprise when yesterday I got a letter from the

hospital (where the pain management unit (PMU) is located) to say that I am

booked for the full body bone scan on Friday!

>

> Is there anything I should know about having this scan done?

>

> I am happy to have it done although slightly apprehensive as the PMU are

questioning my diagnosis -suggesting my Rheum and I are basically imagining my

arthritis despite my obvious visible joint inflammation. My bloods have been

inconclusive and I think they are looking for classic RA presentation and don't

really understand that it's not always that neat and tidy.

>

> Is it possible that this scan will show no " hot spots " even though I am in the

middle of a flare?

>

> I had a pretty large intramuscular injection of steroid today to hopefully

bring the flare under control as oral pred for the last 2.5 weeks hasn't worked.

This was done by my GP at Rheum's request so my Rheum doesn't know that the bone

scan is about to happen. Can this affect bone scan results/uptake?

>

> I know that none of you are doctors but I thought I might be able to get some

helpful info. Just nervous about further bad treatment by PMU doctors if they

don't get conclusive results. They have some power in the part of Australia

where I live to influence my future treatment/access to pain medication (which

is government regulated) if/when I need it.

>

> Hate having to play " games " with doctors but I want to protect myself as much

as possible.

>

> Thanks

>

> Ali

[Guest guest]

Hi Ali,

I'm just gettting started with my RA treatment plan, so I don't have as much

experience as some of the people on this site.  But I have to say that I can't

understand why proper treatment can't be given to people who really need it. Why

do the bureaucrats make patients jump through hoops to prove that they need what

should be quality of life treatment?  Doctors should be making those decisions,

period.  I hope your bone scan gives you proof and settles the matter!  God

bless you!

Amy

From: Alison Aston <astoali@...>

Sent: Wednesday, April 6, 2011 9:51 AM

Subject: [ ] Re: Bone scan experiences

 

Thanks

I am glad, in lots of ways, to be having it done. I guess I just want to be as

" armed " with information as possible as the results of this scan could have some

very real implications for my treatment in the future.

In South Australia (the state where I live) the government body that authorises

certain prescriptions can intervene and prevent chronic pain sufferers from

being prescribed pain medication. They are able to do this without consultation

with the prescribing doctor and there is even a current court case where a woman

suffering from an autoimmune disease is having to take the state government to

court to be allowed enough pain relief to provide her with any quality of life.

She has been prevented from having pain relief against her doctors

wishes/advice.

This same government board has also forced chronic pain sufferers into a drug

treatment program alongside heroin addicts, against the wishes of their doctors

with the threat that they would be entitled to no pain relief if they did not

comply.

The pain management doctors interact with this government board so the results

of my scan could have very real implications for my quality of life should I

require ongoing pain relief (as I do at this time).

I would like to be 100% confident that the bone scan results will prove what we

already know but I do know of other RA sufferers who have had problems with bone

scan results and therefore am slightly nervous.

I just wanted to make it clear that I am not apprehensive without cause. Without

these factors I would feel very happy to be having the bone scan done and very

interested in the information it can provide.

Ali

[Guest guest]

After THAT explanation, I sure can understand why you are apprehensive. I am so

sorry that folks can't get what a Doc prescibes w/o jumping through hoops where

you live. An MRI should be a great tool for you to prove what is happening. 

Relax my new friend. You cannot change the outcome either way. Easy for ME to

say I know- but I have been where you are at when I had to get MRI for

disability.  I had 7 kids living at home then and no income. I was scared. Being

scared didn't help me. You know what you feel in your body is the truth. It'll

be OK.

 

Hugs-- in SC

 

Thanks

I am glad, in lots of ways, to be having it done. I guess I just want to be as

" armed " with information as possible as the results of this scan could have some

very real implications for my treatment in the future.

[Guest guest]

Thank you again everyone for your great replies. Just knowing that I can have

somewhere to ask questions and even just say how I'm feeling and know that

there's someone on the other end listening is tremendously helpful.

, after your query I read that article, very helpful thank you. I called the

Nuclear Medicine department at the hospital to get some information. I don't

think they were quite prepared for people asking questions about specific

technologies etc. The poor woman on the phone just kept repeating " it's a bone

scan " . I listed off various imaging techniques to her but all I could get was

" it's a bone scan " . Bless her.

So, I managed to find some info on the hospital website. Apparently I am being

injected with " 99m Technetium MDP " and waiting for that to disseminate through

my blood stream and bones and then being photographed with a gamma camera to

detect distribution of tracer uptake. I think this is called Scintigraphy.

I've now found some very specific articles about the efficacy of this technique

in evaluating RA and feel altogether more armed and ready for it.

For me it comes down to this whole notion of informed consent. If they

won't/can't give me real detailed information about the study I am about to

undergo, how can I give real informed consent?

Thanks again

Ali