Re: Doctor from H***

[Guest guest]

Well I saw the doctor from HELL today. (Sorry for the bad word, but I

couldn't find any other way to say it.)

I thought the visit was going well because he talked to me first and acted

like he was really listening. He was writing everything down. Then he had

me change for the exam. Next he had me dress and did a spirometry test

(which I had to wait an hour for). Then he had me come back to the exam

room.

That is when the nightmare began. First he lectured me that I needed to be

exercising every single day and that I needed to be on an anti-depressant

for my fibro (I wasn't even there to discuss any of this) He also stated

that I was on too many medications. Next he said that I had to come off the

prednisone immediately. He did not give me a tapering schedule!!! But yet

he wanted me off the prednisone in three to four weeks before I came back to

see him. I asked him what other treatment options there were and he said

there were none because I don't have dermatomyositis and I just have the

sensation of not being able to breath because my breathing test was normal.

Well a spirometry is measured in comparison to previous tests and he doesn't

have copies of my baselines, so the test was based purely on my height and

weight which is not accurate. Also it is the muscles of the chest and chest

wall and possibly the diaphragm that are affected and he did nothing to

check this out. He also " confirmed " that I have fibromyalgia, but yet he

never did go over the diagnostic criteria or exam any tender spots.

Then he comments about how dangerous the prednisone is and that gaining 15

pounds is just awful. Then I explained how sick I was in June and I was

almost put in the hospital for the difficulty breathing and that if I come

off the prednisone with no other treatment that I will be on the sofa and

then in the hospital and he said, " Better to be on the sofa than looking

like a chipmunk. "

WELL EXCUSE ME!!! First of all he has never seen me and has no idea what I

looked like before the prednisone so how can he say that the shape of my

face is the prednisone. Of course some of the roundness and puffiness is

the prednisone, but I have a very round face to begin with. I just came

back from a two month vacation and only gained 15 pounds on 60mg of

prednisone. I don't see where that is so bad. I can wear most of my size 8

clothes and have had to pull out a few of my 10's. I am 35 years old, I

don't think that falls into the obese category. HE is the one with an

obesity problem. His belly was so big he couldn't keep his pants up!!!

Then he wanted to run the same tests that my primary ran in June or this

morning with nothing additional such as antibody tests. Most of the tests

he wanted would not be accurate after being on prednisone for three months

as it is, so I didn't see the point. I didn't argue, I just acted like I

was done with the visit and went out to the desk as he said, " There is

nothing I can do for you. " Well if he cannot do anything for me, why did he

want to order tests or to see me again? (oh let me tell you - MONEY) And

if I have my way, he will not get a penny for my visit today. I have

already reported him to my ins. co. I also plan to report him to anyone who

will listen. He put my life in danger today be trying to scare me into

stopping the prednisone and by not making it clear that it has to be tapered

very slowly. Thank the stars above that I am a nurse and knew better than

to come home and not take my prednisone. I could have ended up dead. (Sorry

to sound so negative, but abrupt cessation of oral steroids can cause

adrenal shock, coma, and death, especially if no one knows that you are sick

because you didn't get enough prednisone.

I was so upset. I had teared up as I left his office and just kept my back

to him. As soon as he was gone, I burst into tears. The girl at the desk

was very sweet. She gave me a box of tissues and got me a cup of water.

Then she tried to get me to move into the back. I was shaking so bad I had

barely made it to the chair I was in, so I told her I cannot walk right now.

I sat there a few minutes and pulled myself somewhat together. Then I

looked up at her and said, " If he wants any tests run he will have to notify

my PCP and I will have them done only through his office and I will NOT be

back. Thank you. "

I walked to the nearest payphone and called my PCP. I told them it was not

a life threatening emergency, but it was an emergency and I needed to talk

to him today and 7 at night would be too late. She wanted to call me back,

but I was on a pay phone. I told her I would hold for as long as it took.

She had him on the phone in 2 minutes. I briefly told him that the doctor

wanted to lecture me about my fibro treatment that is fine just as it is,

lecture me about exercise, and I am to come off the prednisone immediately.

He said that laying on the couch or being in the hospital would be better

than looking like a chipmunk. Dr. Spiers was in shock. He said that we

WILL figure this all out one way or another. He said if he has to do the

research himself, and treat me, he will. He said NOT to make any changes in

medications except he did add a diuretic once a day to help with the fluid

retention.

I will briefly see Dr. Spiers on Thurs. for results of labs drawn this

morning before my specialist appointment. Then I see him for a full

appointment on Sept.11 unless he can fit me in somewhere before then (I

suspect he will and I pray he has space before the 11th.)

I was putting all my faith in finding some treatment options and now I feel

as if this doctor doesn't even agree with the diagnosis. I have seen four

rheumotologists and I will NOT see another one. The ones I have seen have

all been quacks.

Thanks for letting me vent. I am so tired from this whole ordeal. Thank

goodness, I do have a massage at 11am and my cleaning lady is coming, some

my house will be beautiful. Those things should cheer me up.

I have a request from you gals. I need articles and links that back up

things such as dm can be mild in childhood and reoccur, that the muscle

enzymes can be normal if the patient was not diagnosed early on, HOW TO FIND

THE RIGHT DOCTOR, etc.

If any of you have information about the different treatment options, that

too would be most appreciated.

I also plan to call the Muscular Dystrophy Association tomorrow to see what

they will suggest. I understand all you need is a referral with a letter

from the doctor stating why he thinks you have dm. Then they will see you

insurance or not and even if you cannot pay they will evaluate you.

I am still very concerned that they have not done a muscle biopsy or an EMG.

They have not even considered MS, which lately seems to be a possibility.

And ALS can cause the difficulties breathing that I have and that has not

even been discussed much less tested for.

Okay, enough of my long, said story. The good news is that my PCP was right

there when I needed him, my husband was very supportive and said all doctors

are jerks, but what do you do when you have to find a good one. My boys

were very sweet. said I was pretty no matter what and gave me a kiss

on the cheek. He was ready to run up to this doctor and hit him until a

friend said we should call him the groundhog. Then cracked up

laughing and said the chipmunk is chasing the groundhog.

I am running out of steam very quickly for once and will take a bedtime

break. I will be back on tomorrow to tell you anything I left out.

Sorry for not reading all your posts tonight. I just couldn't do it. I

feel like my body has been run over by a Mack truck and my brain is out in

left field somewhere or is it on the shelf next to the corn? And I feel

like my emotions are still on a roller-coaster. I will catch up tomorrow.

Gentle hugs,

Fern

[Guest guest]

Fern,

i am so very sorry that happened to you. Really mean it. I can truly

empathize with how you feel, and i am so afraid of getting that treatment

myself. I wish i could make it all better for you.Just my opinion, but your

family and friends might expect you to just shrug that off in a few days.

You might find it's not that easy. If you still feel traumatized about after

a few weeks or months then don't hesitate to talk about it some more. That's

what we're here for, and beleive me a lot of us can relate.

--- Original Message -----

To: <OurMyositisegroups>

Cc: <fibro-thriveegroups>

Sent: Wednesday, August 30, 2000 1:26 AM

Subject: Re: Doctor from H***

>

> Well I saw the doctor from HELL today. (Sorry for the bad word, but I

> couldn't find any other way to say it.)

>

> I thought the visit was going well because he talked to me first and acted

> like he was really listening. He was writing everything down. Then he

had

> me change for the exam. Next he had me dress and did a spirometry test

> (which I had to wait an hour for). Then he had me come back to the exam

> room.

>

> That is when the nightmare began. First he lectured me that I needed to

be

> exercising every single day and that I needed to be on an anti-depressant

> for my fibro (I wasn't even there to discuss any of this) He also stated

> that I was on too many medications. Next he said that I had to come off

the

> prednisone immediately. He did not give me a tapering schedule!!! But yet

> he wanted me off the prednisone in three to four weeks before I came back

to

> see him. I asked him what other treatment options there were and he said

> there were none because I don't have dermatomyositis and I just have the

> sensation of not being able to breath because my breathing test was

normal.

> Well a spirometry is measured in comparison to previous tests and he

doesn't

> have copies of my baselines, so the test was based purely on my height and

> weight which is not accurate. Also it is the muscles of the chest and

chest

> wall and possibly the diaphragm that are affected and he did nothing to

> check this out. He also " confirmed " that I have fibromyalgia, but yet he

> never did go over the diagnostic criteria or exam any tender spots.

>

> Then he comments about how dangerous the prednisone is and that gaining 15

> pounds is just awful. Then I explained how sick I was in June and I was

> almost put in the hospital for the difficulty breathing and that if I come

> off the prednisone with no other treatment that I will be on the sofa and

> then in the hospital and he said, " Better to be on the sofa than looking

> like a chipmunk. "

>

> WELL EXCUSE ME!!! First of all he has never seen me and has no idea what

I

> looked like before the prednisone so how can he say that the shape of my

> face is the prednisone. Of course some of the roundness and puffiness is

> the prednisone, but I have a very round face to begin with. I just came

> back from a two month vacation and only gained 15 pounds on 60mg of

> prednisone. I don't see where that is so bad. I can wear most of my size

8

> clothes and have had to pull out a few of my 10's. I am 35 years old, I

> don't think that falls into the obese category. HE is the one with an

> obesity problem. His belly was so big he couldn't keep his pants up!!!

>

> Then he wanted to run the same tests that my primary ran in June or this

> morning with nothing additional such as antibody tests. Most of the tests

> he wanted would not be accurate after being on prednisone for three months

> as it is, so I didn't see the point. I didn't argue, I just acted like I

> was done with the visit and went out to the desk as he said, " There is

> nothing I can do for you. " Well if he cannot do anything for me, why did

he

> want to order tests or to see me again? (oh let me tell you - MONEY) And

> if I have my way, he will not get a penny for my visit today. I have

> already reported him to my ins. co. I also plan to report him to anyone

who

> will listen. He put my life in danger today be trying to scare me into

> stopping the prednisone and by not making it clear that it has to be

tapered

> very slowly. Thank the stars above that I am a nurse and knew better than

> to come home and not take my prednisone. I could have ended up dead.

(Sorry

> to sound so negative, but abrupt cessation of oral steroids can cause

> adrenal shock, coma, and death, especially if no one knows that you are

sick

> because you didn't get enough prednisone.

>

> I was so upset. I had teared up as I left his office and just kept my

back

> to him. As soon as he was gone, I burst into tears. The girl at the desk

> was very sweet. She gave me a box of tissues and got me a cup of water.

> Then she tried to get me to move into the back. I was shaking so bad I

had

> barely made it to the chair I was in, so I told her I cannot walk right

now.

> I sat there a few minutes and pulled myself somewhat together. Then I

> looked up at her and said, " If he wants any tests run he will have to

notify

> my PCP and I will have them done only through his office and I will NOT be

> back. Thank you. "

>

> I walked to the nearest payphone and called my PCP. I told them it was

not

> a life threatening emergency, but it was an emergency and I needed to talk

> to him today and 7 at night would be too late. She wanted to call me

back,

> but I was on a pay phone. I told her I would hold for as long as it took.

> She had him on the phone in 2 minutes. I briefly told him that the doctor

> wanted to lecture me about my fibro treatment that is fine just as it is,

> lecture me about exercise, and I am to come off the prednisone

immediately.

> He said that laying on the couch or being in the hospital would be better

> than looking like a chipmunk. Dr. Spiers was in shock. He said that we

> WILL figure this all out one way or another. He said if he has to do the

> research himself, and treat me, he will. He said NOT to make any changes

in

> medications except he did add a diuretic once a day to help with the fluid

> retention.

>

> I will briefly see Dr. Spiers on Thurs. for results of labs drawn this

> morning before my specialist appointment. Then I see him for a full

> appointment on Sept.11 unless he can fit me in somewhere before then (I

> suspect he will and I pray he has space before the 11th.)

>

> I was putting all my faith in finding some treatment options and now I

feel

> as if this doctor doesn't even agree with the diagnosis. I have seen four

> rheumotologists and I will NOT see another one. The ones I have seen have

> all been quacks.

>

> Thanks for letting me vent. I am so tired from this whole ordeal. Thank

> goodness, I do have a massage at 11am and my cleaning lady is coming, some

> my house will be beautiful. Those things should cheer me up.

>

> I have a request from you gals. I need articles and links that back up

> things such as dm can be mild in childhood and reoccur, that the muscle

> enzymes can be normal if the patient was not diagnosed early on, HOW TO

FIND

> THE RIGHT DOCTOR, etc.

>

> If any of you have information about the different treatment options, that

> too would be most appreciated.

>

> I also plan to call the Muscular Dystrophy Association tomorrow to see

what

> they will suggest. I understand all you need is a referral with a letter

> from the doctor stating why he thinks you have dm. Then they will see you

> insurance or not and even if you cannot pay they will evaluate you.

>

> I am still very concerned that they have not done a muscle biopsy or an

EMG.

> They have not even considered MS, which lately seems to be a possibility.

> And ALS can cause the difficulties breathing that I have and that has not

> even been discussed much less tested for.

>

> Okay, enough of my long, said story. The good news is that my PCP was

right

> there when I needed him, my husband was very supportive and said all

doctors

> are jerks, but what do you do when you have to find a good one. My boys

> were very sweet. said I was pretty no matter what and gave me a

kiss

> on the cheek. He was ready to run up to this doctor and hit him until a

> friend said we should call him the groundhog. Then cracked up

> laughing and said the chipmunk is chasing the groundhog.

>

> I am running out of steam very quickly for once and will take a bedtime

> break. I will be back on tomorrow to tell you anything I left out.

>

> Sorry for not reading all your posts tonight. I just couldn't do it. I

> feel like my body has been run over by a Mack truck and my brain is out in

> left field somewhere or is it on the shelf next to the corn? And I feel

> like my emotions are still on a roller-coaster. I will catch up tomorrow.

>

> Gentle hugs,

> Fern

>

>

>

>

[Guest guest]

Holy cow!

I'm sorry to hear about your experience with this doctor. It sounds

like you did the right thing.

-

--

J. P. Burke .... drmomentum@...

Epinions profile: <http://drmomentum.epinions.com/user-drmomentum>

" Rest in reason. Move in passion. " - Kahlil Gibran

[Guest guest]

Hi Fern....

First let me ask ..... what is the name of this doctor? I also had you

confused with someone else on this list that was going to see two women

doctors so I had hight hopes.... geeez, I hate when I do that.

Does this doctor belong to the AMA? If so, you can file a complaint

with them also.

If you do have DM then you shouldn't exercise everyday but your not

going to find that out if a doctor is not willing listen and perform the

right tests.

I would ask your PCP to call one of the large clinics (I think you said

you live in Virginia, right?) and talk to one of the doctoros there for

advise. Calling the MDA and seeing if you could get evaluated would be

a good idea.

The lung test you had only tests the volume of inhaled and exhaled air.

Thats it... further tests should have been done and the records of your

first test should have been ordered before he opened his mouth. Plus

the Prednisone has made it easier to breath.

When he mentioned you gaining weight and that 15lbs is awful and that

prednisone is a bad drug.... but what about breathing? It is even worse

to not be able to breath. This guys a nut !!

Believe me, 15lbs for being on 60mg is nothing at all. This is the type

of doctor that will end up killing someone with his stupidity.

I am so darn thankful for your PCP to be as sweet as he is. If you

tell me the part of Virginia your from I can start doing some searching.

I truely feel for you. I've been in that position and I know how

frustrating it can be.

I'll start searching for info for your doctor. Don't loose hope Fern,

this is not easy to find a doctor who knows about myositis but we'll

keep checking for you.

I hope your resting now and know that we all care about you.

Gentle hugs

Vicki-pm

[Guest guest]

Fern,

I was FURIOUS when I read your post!!!!! The NERVE!!!!!!!!!!!!!!

He should lose his license for his arrogance and unkindness--talk about

unprofessional!

Ann-Marie

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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http://profiles.msn.com.

[Guest guest]

Hi Fern,......I am so sorry you had to go thru this. Like others here I

can relate too. Have had my share of jerk doctors to last a life time.

From all my years involved with FM groups, most of their Dr.'s used the

standard treatments of exercizing and antidepressants. The exercizing is

to help from getting "deconditioned" which alot of the Dr.'s think pw/fm

are already deconditioned, and the anti-depressants are for the sleep abnormality,

and pain. I don't know many people where this regimen works for them, and

the ones it does work for have a mild case of FM.

I say this because from the groups I've been connected to, most of

the people say they don't feel better, and are still complaining of all

the symptoms they had before they were treated with those 2 things.

Telling you to cold turkey the pred. is just plain stupid

and he needs to be reported to someone,....his superiors, AMA, your insurance,

etc. Even lay people like me knows you can't stop the pred. that way.

How could he even comfirm a dx of FM without doing the tenderpoint

test? And,.....gaining 15 lbs would be devastating to me at 3x,....but

if you are a size 8/10, I am sure you have some leeway,.....and I've heard

once you go off the pred. you lose it anyhow. Or some do anyhow......What

a LUDRICROUS comment to tell you about looking like a chipmunk,....I

would have said "better to look like a chipmonk, then to have my adrenals

crash......"

Thank goodness your PCP was comforting. At least

he believes you. Maybe he will write a letter to that Dr., and tell him

a thing or two. My PCP [the one I had to give up] wrote a letter

to OHSU, about how unprofessional the Neuro I saw was with me, and

later I heard she quit [or probably got fired] and moved back to Minn.

So maybe his letter would at least get that guy a reprimmand.

Just recently I received a survey to fill out about a Dr. I was asking

to be my new PCP, well he told me he didn't have time for all my problems,

and I should find someone else. He was rude, arrogant, and just plain nasty,

so when I got this questionaire to fill out about my experience with this

Dr,. I was all too happy to tell how he treated me. I thought how ironic....ha,

ha,......

Well, Fern know that I empathize so much with you,

and if you need to vent some more I'll be glad to listen. I still don't

know whats going on with me either, no one can make up their mind whether

I have MS or TM [Transverse Myelitis] and anything else that might be progressing

in me......??

I'm in the same predicament trying to find a specialist to help me.

So far I haven't had any success, and I am getting real Dr. shy,.....

Where abouts do you live, maybe I know someone that lives close who

has recommended a good Doc. I know there is a good Doc list with

the CFIDS/FM support group. and then I've got friends all over that have

recommended their Dr.'s, so who knows maybe one is in your area?

BIG HUGS,.......Jax

Starflower wrote:

Well I saw the doctor from HELL today. (Sorry for the bad word,

but IThat is when the nightmare began. First he lectured me that

I needed to be

exercising every single day and that I needed to

be on an anti-depressant

for my fibro (I wasn't even there to discuss any of this) He

also stated

that I was on too many medications. Next he said that I had to

come off the

prednisone immediately. He did not give me a tapering schedule!!!

But yet

he wanted me off the prednisone in three to four weeks before I came

back to

see him. I asked him what other treatment options there were

and he said

there were none because I don't have dermatomyositis and I just have

the

sensation of not being able to breath because my breathing test was

normal.

Well a spirometry is measured in comparison to previous tests and he

doesn't

have copies of my baselines, so the test was based purely on my height

and

weight which is not accurate. Also it is the muscles of the chest

and chest

wall and possibly the diaphragm that are affected and he did nothing

to

check this out. He also "confirmed" that I have fibromyalgia,

but yet he

never did go over the diagnostic criteria or exam any tender spots.

Then he comments about how dangerous the prednisone is and that gaining

15

pounds is just awful. Then I explained how sick I was in June

and I was

almost put in the hospital for the difficulty breathing and that if

I come

off the prednisone with no other treatment that I will be on the sofa

and

then in the hospital and he said, "Better to be on the sofa than looking

like a chipmunk."

WELL EXCUSE ME!!! First of all he has never seen me and has no

idea what I

looked like before the prednisone so how can he say that the shape

of my

face is the prednisone. Of course some of the roundness and puffiness

is

the prednisone, but I have a very round face to begin with. I

just came

back from a two month vacation and only gained 15 pounds on 60mg of

prednisone. I don't see where that is so bad. I can wear

most of my size 8

clothes and have had to pull out a few of my 10's. I am 35 years

old, I

don't think that falls into the obese category. HE is the one

with an

obesity problem. His belly was so big he couldn't keep his pants

up!!!

Then he wanted to run the same tests that my primary ran in June or

this

morning with nothing additional such as antibody tests. Most

of the tests

he wanted would not be accurate after being on prednisone for three

months

as it is, so I didn't see the point. I didn't argue, I just acted

like I

was done with the visit and went out to the desk as he said, "There

is

nothing I can do for you." Well if he cannot do anything for

me, why did he

want to order tests or to see me again? (oh let me tell you -

MONEY) And

if I have my way, he will not get a penny for my visit today.

I have

already reported him to my ins. co. I also plan to report him

to anyone who

will listen. He put my life in danger today be trying to scare

me into

stopping the prednisone and by not making it clear that it has to be

tapered

very slowly. Thank the stars above that I am a nurse and knew

better than

to come home and not take my prednisone. I could have ended up

dead. (Sorry

to sound so negative, but abrupt cessation of oral steroids can cause

adrenal shock, coma, and death, especially if no one knows that you

are sick

because you didn't get enough prednisone.

I was so upset. I had teared up as I left his office and just

kept my back

to him. As soon as he was gone, I burst into tears. The

girl at the desk

was very sweet. She gave me a box of tissues and got me a cup

of water.

Then she tried to get me to move into the back. I was shaking

so bad I had

barely made it to the chair I was in, so I told her I cannot walk right

now.

I sat there a few minutes and pulled myself somewhat together.

Then I

looked up at her and said, "If he wants any tests run he will have

to notify

my PCP and I will have them done only through his office and I will

NOT be

back. Thank you."

I walked to the nearest payphone and called my PCP. I told them

it was not

a life threatening emergency, but it was an emergency and I needed

to talk

to him today and 7 at night would be too late. She wanted to

call me back,

but I was on a pay phone. I told her I would hold for as long

as it took.

She had him on the phone in 2 minutes. I briefly told him that

the doctor

wanted to lecture me about my fibro treatment that is fine just as

it is,

lecture me about exercise, and I am to come off the prednisone immediately.

He said that laying on the couch or being in the hospital would be

better

than looking like a chipmunk. Dr. Spiers was in shock.

He said that we

WILL figure this all out one way or another. He said if he has

to do the

research himself, and treat me, he will. He said NOT to make

any changes in

medications except he did add a diuretic once a day to help with the

fluid

retention.

I will briefly see Dr. Spiers on Thurs. for results of labs drawn this

morning before my specialist appointment. Then I see him for

a full

appointment on Sept.11 unless he can fit me in somewhere before then

(I

suspect he will and I pray he has space before the 11th.)

I was putting all my faith in finding some treatment options and now

I feel

as if this doctor doesn't even agree with the diagnosis. I have

seen four

rheumotologists and I will NOT see another one. The ones I have

seen have

all been quacks.

Thanks for letting me vent. I am so tired from this whole ordeal.

Thank

goodness, I do have a massage at 11am and my cleaning lady is coming,

some

my house will be beautiful. Those things should cheer me up.

I have a request from you gals. I need articles and links that

back up

things such as dm can be mild in childhood and reoccur, that the muscle

enzymes can be normal if the patient was not diagnosed early on, HOW

TO FIND

THE RIGHT DOCTOR, etc.

If any of you have information about the different treatment options,

that

too would be most appreciated.

I also plan to call the Muscular Dystrophy Association tomorrow to see

what

they will suggest. I understand all you need is a referral with

a letter

from the doctor stating why he thinks you have dm. Then they

will see you

insurance or not and even if you cannot pay they will evaluate you.

I am still very concerned that they have not done a muscle biopsy or

an EMG.

They have not even considered MS, which lately seems to be a possibility.

And ALS can cause the difficulties breathing that I have and that has

not

even been discussed much less tested for.

Okay, enough of my long, said story. The good news is that my

PCP was right

there when I needed him, my husband was very supportive and said all

doctors

are jerks, but what do you do when you have to find a good one.

My boys

were very sweet. said I was pretty no matter what and

gave me a kiss

on the cheek. He was ready to run up to this doctor and hit him

until a

friend said we should call him the groundhog. Then cracked

up

laughing and said the chipmunk is chasing the groundhog.

I am running out of steam very quickly for once and will take a bedtime

break. I will be back on tomorrow to tell you anything I left

out.

Sorry for not reading all your posts tonight. I just couldn't

do it. I

feel like my body has been run over by a Mack truck and my brain is

out in

left field somewhere or is it on the shelf next to the corn?

And I feel

like my emotions are still on a roller-coaster. I will catch

up tomorrow.

Gentle hugs,

Fern

[Guest guest]

Jackie,

Sorry I disappeared guys, my phone line has been worse since I got home than

it was before we left for vacation and they promised to have it fixed by the

time we got back. That was a joke!!! We were able to make a few calls if

we got lucky and got a good connection, but the computer would not connect

at all.

Well, I have not read all the messages, but wanted to give everyone an

update on my doctor situation. I saw my PCP yesterday when I took my son

for his asthma follow-up. He was very upset about what happened to me and

said it would be written in my chart about the dangerous behavior of this

doctor and that ANY correspondence from him is to be disregarded. He said

legally he cannot remove it from the chart, but he can make sure that it

will not be used. I also intend to send him a copy of my complaint letter

that is going to everyone I can think of and it will be attached to anything

he receives from this doctor. Oh, and he says he thinks it very odd that he

has not heard one thing from this doctor. He said that if he was so

concerned about my coming of the prednisone immediately and thought it

important, then why didn't he pick up the phone and call him. He said the

PCP is supposed to be informed of any changes, tests, etc. because he is the

one in charge and the specialist really isn't supposed to do anything

without discussing it with the PCP. This is where the HMO rules do come in

handy sometimes.

I WILL be staying on the prednisone until we find other options. My mother

took my sister to a new doctor a couple of weeks ago. He is a pediatrician,

pain management specialist, and neurologist. He wanted info about me and my

mother to help diagnose my sister. My mother liked him so much, that she is

going to start seeing him for her fibro and her epidural steroids. He also

wanted to know how they were treating me and started spouting off things

that they needed to be doing for me. She doesn't remember them all because

she isn't a nurse. I didn't think he would be on my insurance since it is a

two hour drive from here, but he IS!!! I called talked to his office at

length and they were happy to answer all my questions. I made an

appointment for Sept. 8 and then I see my PCP on the 11th. So it all fell

into place. His practice is called " The Lighthouse " and his wife and

children all work there. My mother said it is the most unique office she

has ever been in. I feel very positive and I at least know that I will not

be treated the way I was this week.

Jackie, thank you so much for the sweet comments and the support that you

gave me. I really appreciate it. I didn't stay hysterical very long. I

got ANGRY! How dare a doctor treat a patient this way and he WILL be sorry,

but in the very least he will not be paid for his time with me. I got so

angry about what he said about the fibro because I didn't even go see him

for that. I have a fibro specialist.

Gentle hugs,

Fern

[Guest guest]

Vicki,

Thank you so much for your offer of help. The doctor's name is Dr. Shaun

Ruddy at MCV in Richmond, VA. I believe it was one of the names I was sent

through this list when I first started searching for a diagnosis.

I have called the MDA and they gave me two names. I plan to see the doctor

that my mother saw because she had such a good experience. He wanted my

records to help evaluate my mother and my sister. He offered to take over

my mother's care for her fibro and to treat my little sister who is only 11.

Most doctors will not even admit that a child could have a muscle disorder.

He thinks that if I have DM, that she probably has it too. He also was

making suggestions about how I should be treated and they suggestions were

all things that I have learned on this list or from my own research, so I

have confidence in him. If that doesn't work, then I will get my PCP to

refer me to one of the MDA doctors. I won't give up until I get the answers

I feel are appropriate. I am tenacious as Dr. Spiers says.

Vicki, you would not believe the list of the places I plan to send my

complaint letter. Every organization I can find that he is a member of will

here about my experience.

Yes, the spirometry only measures exhaled air which is to test for asthma

and scar tissue caused by lung damage. It does not measure how the

accessory muscles are working to help you breath and that is what I feel is

my problem. The muscles of my chest are so weak that they are having

trouble expanding my chest far enough for me to get a deep breath. As the

day goes on, this gets worse, which tells me that the muscles are becoming

fatigued.

I also brought it to his attention that the prednisone had helped and that

evaluating me now was not an accurate reading of the breathing or of the lab

tests he suggested. He did NOT agree with me. He obviously is an idot!

My PCP said the same thing you did about the weight gain. What is better,

gaining a few pounds or breathing? I will pick breathing any day!!!

Actually I am pretty proud of myself for being on vacation for two months on

60mg of prednisone and only gaining 15 pounds. I thought I was doing a good

job because I knew when I started taking it that I would gain some weight.

Gentle hugs,

Fern