Re: Doctor's reaction

[Guest guest]

I saw my fibro doctor yesterday and told him about my dm diagnosis. He

didn't like it. He said that he doesn't think that I have dm, that I have

lupus. I said, " Who the hell cares what the label says if the symptoms

match the diagnosis? " (Excuse the language, but we have had this

conversation before and I got a little flustered with him.) He says that dm

is a very serious disorder. And lupus isn't? From my understanding dm does

not usually attack the internal organs and lupus more than likely would. If

I had to choose, I would choose dm and I told him so. He is upset with me

because I went to see the rheumatologist that he referred me to a couple of

years ago (who is his best friend) and this doctor said that I have nothing

but fibro. WRONG! Not to mention that my symptoms have changed drastically

since then, this doctor's dictation of our visit is totally incorrect and he

obviously didn't listen to me. My list of diagnoses include, dm, fms, mps,

cfs, mcs, ibs, asthma, and secondary depression and all I have is fibro?

To make a long story short, I let him know in no uncertain terms that my

family doctor had already made the diagnosis based on the criteria set for

diagnosing dm and that I fit the criteria to a tee. I also told him about

my drastic improvement on the prednisone. I told him that I was sorry that

his rheumy and I didn't get along, but I just don't like the guy and I am

not going back to him. I have an appointment with a doctor at the local

university who specializes in rheumatology, immunology, allergies, and who

is certified by the muscular dystrophy association. If this guy is not the

right doctor for me, fine, but I think he has the specialized training to

follow the dm. I have many allergies as well, so it just makes sense to try

this guy.

The good news is that he approved my trip to N.H. and gave me refills on all

my pain meds including my stronger one so that I don't run out while gone.

He also signed a medical letter for me so that I have some documentation in

case of an emergency. He is truly a good guy, he just has some set ideas

about things like his doctor friends.

Gentle hugs,

Fern

[Guest guest]

Fern - Way to go on sticking your ground!!!! A big

pat on the back for taking your health care into your

own hands. For some reason, Dr.'s are so hard to hold

your ground with. I am proud of you. Like my 7 year

old daughter says... " You go Girl! "

Cari

--- Starflower wrote:

> I saw my fibro doctor yesterday and told him about

> my dm diagnosis. He

> didn't like it. He said that he doesn't think that

> I have dm, that I have

> lupus. I said, " Who the hell cares what the label

> says if the symptoms

> match the diagnosis? " (Excuse the language, but we

> have had this

> conversation before and I got a little flustered

> with him.) He says that dm

> is a very serious disorder. And lupus isn't? From

> my understanding dm does

> not usually attack the internal organs and lupus

> more than likely would. If

> I had to choose, I would choose dm and I told him

> so. He is upset with me

> because I went to see the rheumatologist that he

> referred me to a couple of

> years ago (who is his best friend) and this doctor

> said that I have nothing

> but fibro. WRONG! Not to mention that my symptoms

> have changed drastically

> since then, this doctor's dictation of our visit is

> totally incorrect and he

> obviously didn't listen to me. My list of diagnoses

> include, dm, fms, mps,

> cfs, mcs, ibs, asthma, and secondary depression and

> all I have is fibro?

>

> To make a long story short, I let him know in no

> uncertain terms that my

> family doctor had already made the diagnosis based

> on the criteria set for

> diagnosing dm and that I fit the criteria to a tee.

> I also told him about

> my drastic improvement on the prednisone. I told

> him that I was sorry that

> his rheumy and I didn't get along, but I just don't

> like the guy and I am

> not going back to him. I have an appointment with a

> doctor at the local

> university who specializes in rheumatology,

> immunology, allergies, and who

> is certified by the muscular dystrophy association.

> If this guy is not the

> right doctor for me, fine, but I think he has the

> specialized training to

> follow the dm. I have many allergies as well, so it

> just makes sense to try

> this guy.

>

> The good news is that he approved my trip to N.H.

> and gave me refills on all

> my pain meds including my stronger one so that I

> don't run out while gone.

> He also signed a medical letter for me so that I

> have some documentation in

> case of an emergency. He is truly a good guy, he

> just has some set ideas

> about things like his doctor friends.

>

> Gentle hugs,

> Fern

>

>

__________________________________________________

[Guest guest]

Fern,

Good for you! You go, girl!

Ann-Marie--MCTD/PM

________________________________________________________________________

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

[Guest guest]

Hi Fern, I'm so sorry I'm running late in replying to your post. I had

to tell you kiddo that I'm so proud of you for telling your doctor what

you think. What kind of doctor is he? Internal medicine or something

else?

If you've been diagnosed with DM you must have the skin rash....why does

he think you have Lupus?

When do you see your new doctor? I hope he can give you some answers

that you need. It's so hard to go on this merry go round without the

doctors telling you this an that. I am so glad he gave you the refills

for the pain meds for your trip....Don't you leave pretty soon ????

Well I do hope you had a good day of rest or just doing something that

is relaxing.

Vicki-PM

[Guest guest]

My fibromyalgia specialist is a physiologist. He is great when it comes to

the fibro and treating chronic pain. He writes all my prescriptions and

never argues with me about changing or even increasing the dose when it is

needed. I have been taking more of my Dilaudid lately since the myositis is

making my chest so painful. I also needed more of this for the trip so that

I don't run out. Dilaudid is not one of the meds that can be phoned in and

would be very difficult to get across state lines, so I asked for an extra

prescription and he wrote it without batting an eye. He just doesn't think

that I have more than fibro for some reason and he wasn't crazy about me

quitting work two years ago, but he came around to my way of thinking once I

told him how bad I was functioning. I think he is just one that has to get

used to the idea and he wanted to make sure that I don't get stuck with a

diagnosis that will label me with something incorrect and cause insurance

problems in the future. He really does look out for my best interest. He

speaks his mind, but I like that because I always know what he is thinking.

The doctor that diagnosed the myositis is my family doctor and admits that

he is over his head with this one, but didn't want me to go without

treatment until the end of August when I see the specialist. That is why he

went ahead and started me on prednisone and thank God he did. I am still

struggling with SOB and fatigue, but I am functioning. Before the medicine,

I had gotten to the place that I couldn't not even fix a meal without having

to go to sleep afterwards.

The rash that I have is a rosy, red rash that comes and goes with heat and

sun exposure. It is a questionable rash in the sense that it does not

" look " exactly like you would think for either disorder, so I guess it could

be either one when you consider the rash. I have the rash on my face, neck,

and chest. Sometimes I get the rash on my ankles, knees, and tops of my

feet and hands. When you look at the criteria they use to diagnose Lupus

and DM, I fit the criteria for the DM much more readily. In fact, I fit the

dm criteria without any positive labs, because I have all of the other

symptoms. With the Lupus, I could have it or not, but all my labs are

negative. I don't have a high CPK, but it is 80 and in the past it has been

20-40 and that is when I don't have symptoms.

Yes, we leave for our trip this Friday, June 30. We will stay the weekend

in Pennsylvania with my sister-in-law and arrive in N.H. Sunday, July 2. I

am taking my computer, so I will be back online very soon, hopefully by the

3rd. July 3rd is my birthday and I would like to say hello to everyone by

then.

I have upped my prednisone to 60mg a day. I am taking in three doses of

20mg each. I find I get better coverage that way. The 40mg was doing okay

as long as all I did was sit on the sofa all day, but obviously that isn't

acceptable. The doctor said to go as high as 80 a day without calling him

and to taper when I started seeing some improvement and see how I do. He

says that I can make the decision. I plan to stay on the 60 until we get to

N.H. and get settled. Once I recover from getting up there, if I am feeling

okay, then I might start to decrease the dose very slowly.

I know that the myositis is completely different for me than the fibro in

the way my body reacts to stress and to activity. With the fibro, on a good

day, I could go and go until I dropped. I would pay for it for a day or two

afterwards, but it was mainly muscle pain and fatigue. With the myositis,

activity and stress catch up with me within an hour or two. I know almost

immediately when I have tried to do too much and it takes a lot more rest to

recover from it. I get so SOB that I am struggling to breath and then I get

exhausted from just trying to breath not to mention the fatigue that I get

from the fibro. The good news is that the fibro has been under pretty good

control and I can tell the difference between the symptoms and am learning

what to do for each thing. I am also taking xanax for the anxiety that is

much worse with the myositis than the fibro. I have been struggling with

anxiety especially when my pain would get bad, now I get anxiety from not

being able to breath. Due to this, the doctor approved me to take 2-3 xanax

a day as I need it to prevent the anxiety. He was really worried the

anxiety over not breathing would make all my symptoms much worse.

Gentle hugs,

Fern

[Guest guest]

Hi Fern, it does sound like both doctors have your best interest in

mind. It will be really nice once you get to NH so you can rest more.

That's the key to all of this. REST..REST...and more REST. I know it's

very difficult at times ..... especially if your the type of person

who's been on the go all her life. It's like re-training your brain....

I'll be really glad when you get to see the specialist at the end of

August. I guess your doctor couldn't get you in before you left ?

July 3rd baby....just missed it by ONE day..... wow, I guess you'll be

.....lets see... 26????? this year? Anything special planned for your

birthday?

Hope you had a good weekend..

Vicki-PM

[Guest guest]

You are so right, rest for me is so hard. I feel like I am supposed to be

up doing something, at least paper work or computer stuff. The myositis,

however, has slowed me down so much more than the fibro ever did. It is

making me more willing to ask for help because I know what kind of trouble I

will get into if I do too much. You feel like you can push through some

fatigue and especially pain, but you CANNOT push through not being able to

breath. That will stop you in your tracks!!!

I have never been a very athletic type, but I have always been active, so to

have to slow down and ask for help has been a real learning experience for

me.

My doctor couldn't get me in before I left to see the specialist, so he

decided that if I keep my medical journal and document how the prednisone

works that might be a better diagnostic tool than anything else. He might

be right. It may still not tell us definitively lupus or dm, but we now

know that I have an inflammatory disorder and fibro is not inflammatory. It

doesn't matter to me what they decide to call it, I am convinced and have

been for some time that I have dm. I am almost positive that I have had a

slight case my entire life. I just had too many coincidences during

childhood including this breathing problem.

I am afraid that July 3rd will be my 35th birthday. It is funny how my

birthdays have never crossed my mind and this one doesn't have me too down,

but I cannot believe that I am getting that close to 40. I still feel so

young at heart anyway. The good in all this is that I look very young.

People are shocked when they find out how old my children are. Some people

say I don't even look old enough to have children, now that's a compliment.

Nothing special planned for my birthday. I have already spent too much

money getting ready for this trip. I bought some very comfortable clothes.

One of my problems is the muscles around my waist hurting and I need things

that give. I cannot wear jeans to ride in the car. I found a wonderful

line of clothing called Carolyn Strauss. I started by ordering two pieces

and have now ordered several more, so I guess that will by my birthday

present. I also ordered an organizer purse for the trip that will hold all

kinds of things in a lightweight, compact bag.

Oh, and since I have been having so many problems with my skin, I ordered

some new skin care products. Those have already come and I am already using

them. I decided to try Principal's line. It is called Principal

Secret. I usually don't go with a more expensive line or one that is known

for its name. I am the kind of person that if it is a good product, it

doesn't matter to me whose name is on it. But I heard such good things

about her products and she has such beautiful skin that I decided to give it

a try. It is more expensive than what I was using, but it isn't as

expensive as the department stores and what I was using was making my skin

awful. I cannot say enough good about her products. I have been using them

about two weeks and my skin already has improved greatly and she has

products for the entire body, so I can treat the skin problems with her skin

care. I have so many allergies, that I am always skeptical, I was so

impressed with her products that I even sat down and wrote her a letter

thanking her for being so honest about her products and the way she presents

them to the public.

Okay, enough girl talk, but I cannot help but be excited. My skin has

always been so important to me, been easy to care for, and been very

attractive. The dm has changed that it and it was really getting to me, so

I am relieved to have found something that is making it better. I also

think that the prednisone is improving my rash.

Gentle hugs,

Fern

[Guest guest]

Well Fern, I'll be 67 tomorrow and I still feel

young (until I try to do something that is..lol)

I can certainly relate to your feelings......the

mind & the body do NOT work the same.....

my mind says " you can do it " and my body

says " you have got to be kidding " .......asking

or accepting help has been the hardest thing

for me to handle.....I have always been very

independent and it didn't come easy.......I've

said that if the Lord wanted to teach me

humility he sure know what to do!!

I've had DM for ovr 4 yrs now and I still haven't

completely come to terms with it yet......THe

thing that gets to me now is the fact that I am

probably as good as I am going to get.....and

I shouldn't complain as I can function on my

own with just a few limitations.......can live

alone, drive, hold down part time job and

manage to do most things I want to....sometimes you have to invent new

methods for doing them.....lol

Teddi - dm

[Guest guest]

Fern

I find with this disease, your mind is still as active as ever with a

few mind fades here and there..... I always have my mind working....it's

just when I go to get up that reality sets in....not a pretty picture.

I've been so active all my life...I miss not being able to go horseback

riding any longer....heck, I can't even begin to lift my saddle up on my

mare's back....much less have the strength to strap it down. I use to

lift weights and was always very strong....now, I find it hard to do

simple tasks....

When I first got sick, resting was not hard to do....since I would sleep

some 20 to 22 hrs a day. Once I got better I thought I could go back to

my normal life...HA!!! Now I wonder what is NORMAL for me...

Keeping a medical journal is a great idea while your gone. I wished I

would have kept one while I was under the care of the dork doctor who

let me go so long without help....

When they did your blood workup.... didn't they test you for Lupus?

Fern, I looked forward to my 40th for at least 8 yrs before hand.... it

had to be better than my 30s... it was. My attitude really changed and

I started doing for myself instead of everyone around me known to man.

Things change when you hit 40....don't know why but it does. Here I am

at 54, my body looks like it's 70, my brain is still a teeny bopper....

I use to look young, runs in my family. We tend not to get wrinkles for

many, many years. But this disease takes it tole and that I can't get

use to. Over just a few months I not only gained 55 lbs, my face

ballooned out like two bowling balls put together, but I also had a

water tower on my back wrapped around my neck. Not a very attractive

site I must say.

I have wrinkles around my mouth that weren't there 6 months ago...my

clear, fresh complexion is now gone.... Oh well, I guess it could be

worse....

Do you order the Carolyn Strauss clothes over the internet? I would

love to find comfortable clothing.

Vicki-PM

[Guest guest]

Well Teddi, your just a spring chicken. A very young 67...wow.... I

have to say you don't look that age. Got anything good planned for your

birthday? Cheese Cake maybe?

Vicki-PM

[Guest guest]

Vicki,

The Carolyn Strauss clothes can be ordered over the TV through QVC or

through their internet site iqvc.com.

NORMAL, I have given up trying to figure out what that is. I really don't

care anymore. I want to live my life for myself, my God, and my family and

not in some way someone else says I should. Who truly knows what normal is

anyway?

> When they did your blood workup.... didn't they test you for Lupus?

>

Yes, they did a workup last Nov. and about a year before that and the lupus

tests were all negative except for my positive ANA. The ANA is 1:1640,

which is significant. They just haven't matched it with anything yet

(except maybe the dm).

And for those of you with lots of rashes on your face I really believe this

Principal Secret would help you with that too. They sell her products

through HSN both on the TV and over the internet at hsn.com. You can see

how attached to home ordering I am. I still love to shop and just cannot do

it the way I want to, so I have replaced that urge with the TV and the

computer and it sure does save lots of steps.

Gentle hugs,

Fern

[Guest guest]

Fern, thanks for the info...I am sooooo hooked on shopping at home. I

did all my xmas shopping last year over the internet. Works for me....

Vicki-PM

[Guest guest]

Dear Friends,

I,m so thrilled to find so much news and read other peoples troubles. I,

too, am told I look much younger than I am. I,m 76, but you can,t go by

looks. I can relate to everything that Fern and the other lady mentioned. I

try to look at all the many blessings I have instead of dwellin on the

negitives. It works, believe me. I have swollowing problem when I eat. By

the way, I have IBM, and Perpherial Nueopathy

in my feet and legs. I read in the " Outlook " magazine, that IVIg will help

this. Do any of you have any infomation on this ailment? I was diognosed

with Polomyositis in 1991. In 1996 I had 2 biopsies and my diagnosis was

IBM. You can always look around and see others are much worse off than you

are. Thanks for listing to me.

Love to all who reads this, " Ev. " My nickname. ejspess@...

[Guest guest]

Dear Ev:

There are two medical thoughts about IVIg treatment:

1. IVIg doesn't help IBM patients who have had the disease long

2. IVIg MAY help newly diagnosed IBM patients.

The treatments are

1. Expensive - approx $8,000 - $10,000 (most insurance companies won't

pay this)

2. The ingredients of IVIg make for a shortage of the fluid.

In my support group in Dallas area; 6 patients took it. Four said it was a

failure; 2 said it did them no good.

Of the four, one man's kidney's shut down on the first treatment; finally

got a kidney transplant three years later and he was one of the lucky ones.

Good luck,

Jim-IBM

JRKilpatrickMYO@...

[Guest guest]

Hi Jim,

Thank you for your input. I have had 3 different inj. of IVIg. The first

one was in the Univ. of Ark. in Liitle Rock. I chose to stay in the

Hospital, for my inj. It cost $36,000, for 5 days. The next 2 were done in

Hot Springs, as an outpatient. The cost for that was, $19,000 each. I,m on

20 mgs., of Prednisone, but I,m very weak.

You are probabaly asking your self, how come i,m in Tomball, Tx. now? My

husband of 53 years of married life, passed away June 15th, 1996. His twin

sister just passed away--June 18th. After I sold our home in Hot Springs, my

daughter wanted to move down here near her, so I live in an apt. near

her--for " normal " people it would be within walking distance!!I

I belong to the American Myositis Association, are you familiar with it? The

pub. is called the " Outlook " If you would like the address, I can give it

you. I like this info too. Thanks again, Ev.

[Guest guest]

Tedi,

Thanks for your welcome, makes me feel good! Tell me more about your self

O>K>? Ev.

[Guest guest]

Hi Vicky,

Thanks for the welcome--Hope I,m not repeating myself! I,m finding

everything very interestering to read, every one a little bit different. I

did my laundry this morning and now I,m worn out. I just got an aide working

out nicely, and she quit! Now I will have to train another one, when the

nurse finds another one to take the job. Oh well, things could be worse!

Sincerely,

Ev.

[Guest guest]

It is my stomach and arms that have changed

so drasticly......I have been heavy ever since

I had babies but was fairly flat above the

waist.......now with the pred I look 8 mo

pregnant......and my arms.....that paper thin

layer is wrinkled with white scars all over

where that layer would rip.....You are right

Vicki.......the mind still thinks it's a kid....

just wish it could convience the body!

Teddi -dm

[Guest guest]

Dear Jim,

Thanks for the newsletter--I received it today and liked it a lot.

Does IBM affect men more than women? It seemed so when I was reading the

quotes in the newsletter.

Take care of yourself as you finish up with the book!

Ann-Marie--MCTD/PM

________________________________________________________________________

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

[Guest guest]

Vicki

I had all sorts of decadent things in mind for

today buuuuut is coming down to stay

until her dr appt Thurs and I am experiencing

a small crash from the hectic time last week

so will be lucky if I move from Ye Olde Recliner

Teddi -dm

[Guest guest]

Hello Ev... This is Vicki and I have PM with lung involvement. I'm so

happy to have you on the list.

I just had a friend call me last night and they discovered that she has

Polynueopathy...sensomotor I believe she called it.

We have a gentleman on the list, Jim, who also has IBM.... you two can

compare notes...

I went through the swallowing problems also. I had to quit eating out

because I was afraid of choking in public.

Gradually it went away....it only comes back when I'm really, really

tired...

I'm currently on Enbrel which I feel has made my life much easier. Hope

your having a great day...

Hugs

Vicki-PM

[Guest guest]

You're right - IBM does attack more men than women - Glad you enjoyed the

newsletter.

Jim-IBM

JRKilpatrickMYO

[Guest guest]

Hi

Welcome to the group...I personally am glad

to have someone in my age bracket.......have

been overwhelmed by all these " kids " <VBG>

Teddi

[Guest guest]

Hi Ev

Well, for starters we are almost neighbors

as I live in Oklahoma City.......spent most of

my adult life in the Pacific NW......raised my

family in Seattle and ended up living on the

central Oregon Coast (I did grow up in Ok)

.......I got back here the same way you did

......am a widow and my youngest daughter

lives back here....she decided that Mom

needed to be closer to her in case I got

sick.....so here I am!

I am an artist.....I oil paint but am mainly

a bead artist and design and make bead

jewelry......love to travel....in fact was RVing

in Az when I was dx with dermatomyositis.

......so have had my wings clipped somewhat.

I'm a Dixeland jazz fan and a confirmed

" cataholic " ....am presently owned by four

fabulous finiky felines......lol

Ha.ve 4 grown children - 2 girls & 2 boys

8 grandchildren and 1 ggrandchild

Guess that pretty much tells you more

than you really wanted to know......LOL

Teddi

[Guest guest]

Hi Tedi,

I really enjoyed your letter. I will tell you more about myself, since you

were so kind to give this valuable info. I was born in Santa Ana, Ca.,1923,

near a sugar beet factory. I tell everyone thats why I,m so sweet. ha ha.

Iwent to work for Consoldated Air Craft after graduating from Hi-School,

which was in Belleflower,Ca.

I married an Arkie and we had 3 girls, 2 granddaughters, 2 grandsons {adopted}

was married 53 years when my husband passed away. The rest is History.

Thanks for listening.

Love to all of ya,all!

Ev.