Re: It's official....My rheumy is FIRED

[Guest guest]

Sandi,

I see Dr Don Stromquist up by the LDS Hospital. I have been seeing him for

almost 13 years and he is good to me. He is somewhat difficult to get into,

but he just recently got another Rheumatologist in with him and he has a

wonderful PA, her name is June (I think). If you want to contact me off

list, I will give you his address and phone #.

I hope you feel better soon.

Becky

Elko, NV

_____

From:

[mailto: ] On Behalf Of Ms Sandi

Sent: Sunday, October 01, 2006 10:58 AM

Subject: [ ] It's official....My rheumy is FIRED

Does anyone on this list know of a good rheumy in or around Salt

Lake City?

Thanks for listening

Sandi

..

<http://geo./serv?s=97359714/grpId=25541/grpspId=1600061610/msgId=5

1228/stime=1159728623/nc1=3848650/nc2=3848644/nc3=3>

[Guest guest]

Sandi, I am being treated for Iritis which causes the same type of

headache. It's not uncommon for PA patients to develope this and only

an Opthalmologist can diagnose it using a special light. If it's not

treated, you can go blind. Your headaches could also be from that

bundle of nerves but I would not chance it. Get it checked out just to

be sure. -Betz

[Guest guest]

If you want to contact me off

> list, I will give you his address and phone #.

>

> I hope you feel better soon.

> Becky

> Elko, NV

>

> _____

Becky,

Please contact mne at SELkinsUT@...

I would be very interested in contacting your doctor.

Thank you soooo much

Sandi

[Guest guest]

I have been seeing Dr. Mathews in Provo since June. I really

like him and he listens to the problems I have. I have been taking

MTX, sulfasalazine, and plaquinel. I saw him today and we will be

making the change to Enbrel on October 30. I live in Santa Clara, UT

and drive to see him every four weeks. It is tough to travel and

when we start the Enbrel I will see him every 8 weeks. Hang in

there....it's tough I know. I have days that I wished had never

come, but I keep on enduring with hope. If you would like his info

just email me.

Good Luck and Best Wishes.....Anne

>

> Hello everyone

>

> I know you have all heard me complain about my rheumy before

(so

> be prepared for the following rant), but I am officially getting a

> new Dr come Monday.

>

> I have been having a lot of problems the last few weeks. I

have

> pretty much lost function in my thumb and forefinger on my dominant

> hand. (Good thing I type with one finger) In addition I developed

a

> heachache on the right side of my face. It felt like s dull wooden

> stake was driven through my eye and another through my ear. Pain

> radiated from the middle. I had this pain for 6 days when my rheumy

> appt came due.

>

> He didn't so much as even acknowledge my headache and said my

> hands are fine. How can they be fine when I can't make a fist and

my

> forefinger looks like it is trying to flip over? But like a good

> patient I just paid my bill and took a new prescription for pain

meds.

>

> On Friday morning I was going insane with the pain in my head

so

> I made an appt with my GP. I told him about my pain and where it

was

> located. He asked me how long I had been hurting. When I told him

9

> days he about fell over. I told him I had been taking 6 to 8 extra

> strength Excedrins and 6 ultracets a day to try and dull it, but I

> was worried about frying my liver with that much acetaminaphen. (The

> whole time I am in his office I have the affected eye closed because

> of pain)

>

> After ruling out infection he said there is a nerve bundle in

> the jaw that branches off in 3 directions (One goes to the eye, the

> other to the ear and the last along the jawline). When that nerve

> gets aggitated it sends unrelenting signals of pain into the face

and

> that it is not unusual for people with inflammatory disease to

suffer

> from it.

>

> He prescribed an anti-sezere (sp?) medicine called Lyrica. He

> said it will interfere with the nerves ability to fire. Guess what?

> It works!

>

> I can tell when it gets close to time to take it as the pain

> starts inching back. But not only has it handled my face pain,

> my " ghost pains " that ran down my arms and legs have stopped too. I

> feel almost human again! I even did laundry last night. :-D

>

> I told him I am most upset that my rhuemy didn't catch this

and

> I am so greatful to have him as my GP. I also told him I am firing

> my rheumy and asked if he could recommend someone with more

> experience with my disease. He couldn't.

>

> Does anyone on this list know of a good rheumy in or around

Salt

> Lake City?

>

> Thanks for listening

>

> Sandi

>

[Guest guest]

>

> Sandi, I am being treated for Iritis which causes the same type of

> headache. It's not uncommon for PA patients to develope this and only

> an Opthalmologist can diagnose it using a special light. If it's not

> treated, you can go blind. Your headaches could also be from that

> bundle of nerves but I would not chance it. Get it checked out just

to

> be sure. -Betz

>

Thank you Betz

I was just at the opthamologist's office 2 weeks ago and he said

my eyes are fine. Can iritis come on that fast? BTW my pain is gone

now that I am on the meds.

As for a new Dr....I called today and made an appt up at the

University of Utah. (I tried calling the number for Dr Stromquist

posted on the net but got no answer) Anyway, their soonest appt is

April 2nd. So I guess I am stuck for a while with my current Dr. I

made the appt and they assured me they have MANY patients with my (our)

disease.

Things are pretty horrible for me today. My right hand is

basically useless and has swelled up so much my palm has split.

Yuck/Owie! I am off to bed.

Thank you everyone for your help and support

Sandi

[Guest guest]

cant help you with a rheumy but here is my 2 cents. my rheumy doesnt want to

hear about anything except my mtx meds and painkillers. he checks my hands and

feet every 3 months. i ask him questions about natural relief or any concerns i

have and he refers me to my gp. who is GREAT. he also wishes that i wouldnt read

these posts. because of concerns i ask him about! so he is only interested in

my liver at this time. oh well...........

lorrie

[Editor's Note: Lorrie, I wouldn't tolerate a rheumy like yours for very long.

At the start of each visit, my rheumy and I go over my most recent lab results

and especially focus on changes, if any. We then review what's been happening

with me, what hurts more, what hurts less, we have a physical exam, etc. The

remainder of the visit focuses on questions I might have, articles I may have

read on the disease, a new promising medication, things I want to ask his

opinion on, politics, a new local restaurant - in other words - my rheumy knows

he works for ME and is paid by ME and we make the visit of value to ME. Your

rheumy acts as if knowledge and questions are an invasion of his privacy and

that is not acceptable in my book. Kathy F.]

Ms Sandi <utahgoddess2000@...> wrote:

Hello everyone

I know you have all heard me complain about my rheumy before (so

be prepared for the following rant), but I am officially getting a

new Dr come Monday.

I have been having a lot of problems the last few weeks. I have

pretty much lost function in my thumb and forefinger on my dominant

hand. (Good thing I type with one finger) In addition I developed a

heachache on the right side of my face. It felt like s dull wooden

stake was driven through my eye and another through my ear. Pain

radiated from the middle. I had this pain for 6 days when my rheumy

appt came due.

He didn't so much as even acknowledge my headache and said my

hands are fine. How can they be fine when I can't make a fist and my

forefinger looks like it is trying to flip over? But like a good

patient I just paid my bill and took a new prescription for pain meds.

On Friday morning I was going insane with the pain in my head so

I made an appt with my GP. I told him about my pain and where it was

located. He asked me how long I had been hurting. When I told him 9

days he about fell over. I told him I had been taking 6 to 8 extra

strength Excedrins and 6 ultracets a day to try and dull it, but I

was worried about frying my liver with that much acetaminaphen. (The

whole time I am in his office I have the affected eye closed because

of pain)

After ruling out infection he said there is a nerve bundle in

the jaw that branches off in 3 directions (One goes to the eye, the

other to the ear and the last along the jawline). When that nerve

gets aggitated it sends unrelenting signals of pain into the face and

that it is not unusual for people with inflammatory disease to suffer

from it.

He prescribed an anti-sezere (sp?) medicine called Lyrica. He

said it will interfere with the nerves ability to fire. Guess what?

It works!

I can tell when it gets close to time to take it as the pain

starts inching back. But not only has it handled my face pain,

my " ghost pains " that ran down my arms and legs have stopped too. I

feel almost human again! I even did laundry last night. :-D

I told him I am most upset that my rhuemy didn't catch this and

I am so greatful to have him as my GP. I also told him I am firing

my rheumy and asked if he could recommend someone with more

experience with my disease. He couldn't.

Does anyone on this list know of a good rheumy in or around Salt

Lake City?

Thanks for listening

Sandi

---------------------------------

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[Guest guest]

A number of people have expressed disappointment with their rheumatologists

lately. I think it is important to remember a few things:

1) You are one patient among, possibly, thousands that your rheumy sees.

The primary responsibility for your care, therefore, rests with YOU. Always

research things on your own rather than just trusting implicitly every word

that comes out of your doctor's mouth.

2) You would not pay the cashier for groceries if the cashier didn't let you

have the groceries you wanted to buy so why would you pay your doctor if

your doctor has not given you satisfactory attention during your visit? It is

up to YOU to tell your doctor if you feel he or she is being dismissive. You

ARE allowed to say that to a doctor.

3) Your doctor IS busy, so come prepared to your visits. Before you go,

make a list of all the scripts you will need renewed. Write down all the

important things that have happened to your health/condition since your last

visit.

If you have questions, write them down. Your doctor may be willing/able to

spend more time with you if you have invested time in yourself by preparing

for your visit so that the time spent with the doctor is focused, direct and

useful to you. That means doing your homework. If you want to discuss

possibly going on Humira, for example, research ahead of time what the possible

side effects of the medication are so you don't have to waste your doctor's

time going over things that you can readily find out elsewhere. Instead, you

can ask him/her to hone in very specifically on why they think Humira would or

would not be good for YOU. How long will you be on the medication before

you'll know if it's working. Are there any medications you are currently

taking

that would conflict with it. Ask follow up questions, such as " why do you

think that " or " how many other patients have you seen that happen to " . Lead

the discussion so that you get answers to YOUR questions.

4) Always remember that the doctor is NOT your superior. He or she has a j

ob and they are being paid by YOU to do a job that pleases you. You do not

exist for their whim. Once your doctor sees you as an equal, he or she may be

more inclined to treat you as an equal. If you meekly accept whatever a

doctor says or does to you, there is no reason for the doctor to treat you as

anything other than someone he or she can be dismissive of.

5) If your doctor is annoyed by answering very focused questions or doesn't

respond to you in ways that satisfy you, YOU have the responsibility to find

another doctor rather than continuing to tolerate this behavior. Be sure to

let your PCP know how utterly unsatisfactory this rheumatologist was. If the

rheumy starts losing patients and referrals, it may help them to clean up

their act.

Kathy F.

[Guest guest]

I don't know of any in Salt Lake, sorry. I was actually wondering if anyone

could recommend a good one in Syracuse? I'm just not happy with mine, and

am starting to think maybe I need a second opinion.

Beth Erwin, Educational Credentialing Coordinator

Medical Staff Services, CWB 208

Phone: 315-464-5651

Fax: 315-464-8524

[Guest guest]

Hi Lorrie,

Just remember, YOU are the one that can choose to put up with that

attitude or not.

I'm don't know about you, but I certainly wouldn't.

When you say " oh well " , you are giving up and giving your Rheumy

permission to continue treating you just like the rest of the " cogs " on

his assembly line of patients.

Why would he change if you are giving him permission? (He may NEVER

change), but if you don't push the issue, he may not even know you

aren't happy with being a cog.

AND You can always see a different rheumy.

Stay Well,

[Guest guest]

Many of us have a mixed bag with our rheumy's I think.

I had a great one who fought tooth & nail to get me Enbrel back when

their was a huge wait list & I had just had a baby. However, he never

told me I had osteo in my right knee (he even did an MRI on that knee),

and only gave cortisone shots for the pain.

My new dr. here in AZ told me " the osteo in your right knee " I was

like " WHAT?! " it was right there in my chart. She also told me I

should try Synvisc vs. repeated cortisone injections for my damaged

knee, which have worked fabulously.

So now I don't know what to think of my dr.... was he a good dr? Bad?

I couldn't be proactive if information important to my treatment was

withheld.

-Marietta

[Guest guest]

thanks all for your thoughts on drs. (rheumy's) ive never had a " specialist "

before. i really never know which one to ask. my GP or rheumy. so many times

he will tell me to ask my GP. i would love to just have one to take it all on.

BUT I WONT QUIT! and NO. i wont take it. thanks for the kick in the butt.

lorrie

[Guest guest]

Kathy, I couldn't agree with you more- provided you are in a

consumer position and can pick and choose Rhuems. So, I would like

to add this.

I think many people are in my situation. My provider has one

Rhuem, no choices, him or the hwy... fortunately he is an adequate

doctor -though we don't always agree, e.g. I want more remicade and

he won't up my dose. Eventually, most likely. But I know it's

because he is afraid. And why not... another patient may be getting

remicade and decide to sue for a headache. Bad stuff happens

everyday with the medicines we are on. I'd be nervous too.

However, I've learned as a member of an HMO that one needs to

consider their options, or if in fact, they have any options and

then temper their complaints to what reality will dictate. THERE IS

SIMPLY NOTHING WORSE THAN BEING ON THE BAD SIDE OF THE ONLY DOCTOR

IN TOWN BY, reporting him because you don't agree with him about

your medical treatment. Or just constantly going logger heads with

them. These situations require, patience and finesse. Sometimes

they do involve getting outside opinions, reporting or complaining,

but the best thing is to present your questions, concerns and

disagreements in a non-hostile (meaning no threat to the doctor's

reputation) way.

My Doctor is too conservative for my tastes but he has to think

about giving me what I want in terms, unfortunately, of what the HMO

will allow, in terms of if I decide to come back and sue him because

he gave me what I want and didn't follow his own conservative

judgement. For me it's a marriage, a tango....he's going to be my

rhuem for a long time. If he was too conservative, e.g. wouldn't

put me on biologics, I'd seek an outside opinion, I'd do nothing but

present evidence at every appointment. (I love pubmed) You are so

right about being armed with knowledge and being responsible for

your treatment.

Sometimes, we are stuck with the only doctor in town and we

absolutely must then figure out how to make the best of the

situation and eventually get what we want. I wish Rhuems were as

plentiful as produce choices but they aren't for many. So, we got

to work da' system. Other than that I firmly believe in applying on

the points you presented including firing them, if need be. I'm

sorry I am always so long winded... I think it's some sort of

disorder..lol

I

>

> A number of people have expressed disappointment with their

rheumatologists

> lately. I think it is important to remember a few things:

>

> 1) You are one patient among, possibly, thousands that your

rheumy sees.

> The primary responsibility for your care, therefore, rests with

YOU. Always

> research things on your own rather than just trusting implicitly

every word

> that comes out of your doctor's mouth.

>

> 2) You would not pay the cashier for groceries if the cashier

didn't let you

> have the groceries you wanted to buy so why would you pay your

doctor if

> your doctor has not given you satisfactory attention during your

visit? It is

> up to YOU to tell your doctor if you feel he or she is being

dismissive. You

> ARE allowed to say that to a doctor.

>

> 3) Your doctor IS busy, so come prepared to your visits. Before

you go,

> make a list of all the scripts you will need renewed. Write down

all the

> important things that have happened to your health/condition since

your last visit.

> If you have questions, write them down. Your doctor may be

willing/able to

> spend more time with you if you have invested time in yourself by

preparing

> for your visit so that the time spent with the doctor is focused,

direct and

> useful to you. That means doing your homework. If you want to

discuss

> possibly going on Humira, for example, research ahead of time

what the possible

> side effects of the medication are so you don't have to waste

your doctor's

> time going over things that you can readily find out elsewhere.

Instead, you

> can ask him/her to hone in very specifically on why they think

Humira would or

> would not be good for YOU. How long will you be on the medication

before

> you'll know if it's working. Are there any medications you are

currently taking

> that would conflict with it. Ask follow up questions, such

as " why do you

> think that " or " how many other patients have you seen that happen

to " . Lead

> the discussion so that you get answers to YOUR questions.

>

> 4) Always remember that the doctor is NOT your superior. He or

she has a j

> ob and they are being paid by YOU to do a job that pleases you.

You do not

> exist for their whim. Once your doctor sees you as an equal, he

or she may be

> more inclined to treat you as an equal. If you meekly accept

whatever a

> doctor says or does to you, there is no reason for the doctor to

treat you as

> anything other than someone he or she can be dismissive of.

>

> 5) If your doctor is annoyed by answering very focused questions

or doesn't

> respond to you in ways that satisfy you, YOU have the

responsibility to find

> another doctor rather than continuing to tolerate this behavior.

Be sure to

> let your PCP know how utterly unsatisfactory this rheumatologist

was. If the

> rheumy starts losing patients and referrals, it may help them to

clean up

> their act.

>

> Kathy F.

>

>

>

[Guest guest]

Anne...best wishes on the Enbrel. I pray it works wonders for you as it

did for me for a bit at least. Let's hope you get relief for a good

long while. Betz

[Guest guest]

>

> Anne...best wishes on the Enbrel. I pray it works wonders for you as

it

> did for me for a bit at least. Let's hope you get relief for a good

> long while. Betz

>

Thanks Betz for your kindness and support. Glad to hear you're back

home. I'm praying your doctors will figure out a way to get this thing

in some form of remission for you. You're always so positive and a

wonderful example to me. My doctor just put me on morphine last Fri,

for the pain. I have to wait until the end of the month for approval

from the ins. co. for the Enbrel. Keeping my fingers crossed...oh

wait...they always look like that! Boy, that " Anne " is a wonderful

name!! I knew there was a reason I liked you!!

[Guest guest]

> >

> > Anne...best wishes on the Enbrel. I pray it works wonders for you as

> it

> > did for me for a bit at least. Let's hope you get relief for a good

> > long while. Betz

> >

> Thanks Betz for your kindness and support. Glad to hear you're back

> home. I'm praying your doctors will figure out a way to get this thing

> in some form of remission for you. You're always so positive and a

> wonderful example to me. My doctor just put me on morphine last Fri,

> for the pain. I have to wait until the end of the month for approval

> from the ins. co. for the Enbrel. Keeping my fingers crossed...oh

> wait...they always look like that! Boy, that " Anne " is a wonderful

> name!! I knew there was a reason I liked you!!

>

[Guest guest]

> >

> >

> Hi Anne,

>

> Wow Morphine for pain, here's a good old fashioned Yorkshire hug on

> its way to you. It can be felt across the whole of the universe not

> just the internet. You just have to ask others to confirm that it

is

> true. Put a single white rose in a glass vase and the hug will

remain

> with you for whenever you need it.

>

> Keep the light shining,

> Ian.

>

> Hi Ian.....Thanks for the hug! It was certainly not what I wanted

to resort to, but it is working well. I have finally been able to

get some much needed sleep.