Re: Today's rheumatology visit

[Guest guest]

, I am so sorry to hear of your frustrating visit, especially when you

travelled so far.  I think your idea of seeing your primary care doc and asking

for a revised game plan is a good one.  If you're not willing to go off the

P'nil, I would call the UM doc's nurse and explain that it's important to you to

stay on it.

[ ] Today's rheumatology visit

I just returned home from my 7 hour round trip to U of M. I've never left a

hospital or doctor's visit so upset my whole entire life! I took in a diary of

my symptoms the past 8 weeks. I advised how the stiffness has worsened, pain has

been extremely high, feet and ankles hurt and cannot put weight on them or walk.

Knees and tops of feet near toe joints have been warm. Have been running a low

fever. Have troubles using hands. Just at my last visit she stated it was

unspecified connective tissue disorder and that the next step in treatment is

Enbrel or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt me so she

wants to simplify my treatment plan. She tells me to STOP taking my Plaquenil

(yet when I miss one single dose due to forgetting I am in extreme pain). She

told me to keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to

15. What good is this

supposed to

do? I'm barely able to walk. Then she says it has more to do with the FMS at

this point. Then why do I have inflammation the past few weeks, elevated CRP,

SED, WESTEGREN? I don't get it at all. This is one of the top hospitals in the

U.S. And we were supposed to take a more aggressive stance. She didn't even

offer to xray the hands, or feet that I can barely use, and I have 2 toes that

are becoming deformed. I " m at a loss. Do any of you have any idea why this would

have been done? Especially from a medical stand point? I'm ready to call my

family doctor to ask him to go over the last two reports he received from them.

My rheumatologist had called me at home personally to tell me the blood tests

were elevated, shes the one who sent me to Ortho and Sports Med to see different

doctors who also said this is inflammatory. She has me coming back in 8 weeks

yet they no longer treat you if you just have FMS so I am completely lost.

[Guest guest]

Hi :

I am speechless about your dr. appt. Can't they see how you are suffering, and

why take that long haul if they can't treat you? It is insane!!

Will you just go to your Rheumy, and have her treat your inflamatory diseases?

I don't know anything about FMS, or who treats this disease. I can understand

your frustration . I hate when appts. go bad, and then you begin the

round robin from one dr. to another. I could cry for you. Talk about adding to

your stress level. What did they think you kept a daily diary for? It holds

all the information of what you are trying to deal with each day, plus, what

your body is going through. Do they really think we could possibly make it all

up, plus, make our bodies become a swollen, deformed, so much pain, it becomes

unbearable? Our quality of life is crappy? We want to spend days on end in

bed, eating pain meds. like they were gum drops???? What were those drs.

thinking? We have written often, and I know how things are so bad for you. I

can see you leaving that appt., making the long trek home, sputtering and

venting all the way.

FRUSTRATING, and I would probably be crying, and blowing a gasket the whole

time. I am so sorry for what you are going through. God bless you ,

here is a nice hug for you. I care.

Love,

Barbara

From: stephanie <stephieann2@...>

Subject: [ ] Today's rheumatology visit

RA-Support

Date: Monday, June 2, 2008, 5:39 PM

I just returned home from my 7 hour round trip to U of M. I've never left a

hospital or doctor's visit so upset my whole entire life! I took in a diary of

my symptoms the past 8 weeks. I advised how the stiffness has worsened, pain has

been extremely high, feet and ankles hurt and cannot put weight on them or walk.

Knees and tops of feet near toe joints have been warm. Have been running a low

fever. Have troubles using hands. Just at my last visit she stated it was

unspecified connective tissue disorder and that the next step in treatment is

Enbrel or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt me so she

wants to simplify my treatment plan. She tells me to STOP taking my Plaquenil

(yet when I miss one single dose due to forgetting I am in extreme pain). She

told me to keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to

15. What good is this

supposed to

do? I'm barely able to walk. Then she says it has more to do with the FMS at

this point. Then why do I have inflammation the past few weeks, elevated CRP,

SED, WESTEGREN? I don't get it at all. This is one of the top hospitals in the

U.S. And we were supposed to take a more aggressive stance. She didn't even

offer to xray the hands, or feet that I can barely use, and I have 2 toes that

are becoming deformed. I " m at a loss. Do any of you have any idea why this would

have been done? Especially from a medical stand point? I'm ready to call my

family doctor to ask him to go over the last two reports he received from them.

My rheumatologist had called me at home personally to tell me the blood tests

were elevated, shes the one who sent me to Ortho and Sports Med to see different

doctors who also said this is inflammatory. She has me coming back in 8 weeks

yet they no longer treat you if you just have FMS so I am completely lost.

[Guest guest]

Hi Barbara!

Thank you so much for caring! It is very frustrating especially since SHE is the

one that diagnosed the Seronegative and said it was important to treat it

aggressively. Then today, takes meds away, doesn't offer to do any xrays, but

ordered a few labs to see why I keep getting respiratory infections. She

checked some antibodies. She even billed todays visit as FMS and not under the

connective tissue disease code. I've had the FMS for over 8 years and the joint

pain I don't believe is FMS. I get the warmth and redness. The bad flare I had

for 8 weeks ended about a week ago now, I tried to get in to see her during the

flare but she was out of the office. Even my family doctor said in the report

to him that she was going to treat the disorder with methotrexate and more

aggressively. It's almost like she forgot who I was or something today. Yet,

the guy in registration always remembers who I am. I go back in 8 weeks but

with her attitude today it seems pointless.

Barbara Creedon <bcreedon@...> wrote: Hi

:

I am speechless about your dr. appt. Can't they see how you are suffering, and

why take that long haul if they can't treat you? It is insane!!

Will you just go to your Rheumy, and have her treat your inflamatory diseases?

I don't know anything about FMS, or who treats this disease. I can understand

your frustration . I hate when appts. go bad, and then you begin the

round robin from one dr. to another. I could cry for you. Talk about adding to

your stress level. What did they think you kept a daily diary for? It holds

all the information of what you are trying to deal with each day, plus, what

your body is going through. Do they really think we could possibly make it all

up, plus, make our bodies become a swollen, deformed, so much pain, it becomes

unbearable? Our quality of life is crappy? We want to spend days on end in

bed, eating pain meds. like they were gum drops???? What were those drs.

thinking? We have written often, and I know how things are so bad for you. I

can see you leaving that appt., making the long trek home, sputtering and

venting all the way.

FRUSTRATING, and I would probably be crying, and blowing a gasket the whole

time. I am so sorry for what you are going through. God bless you ,

here is a nice hug for you. I care.

Love,

Barbara

From: stephanie <stephieann2@...>

Subject: [ ] Today's rheumatology visit

RA-Support

Date: Monday, June 2, 2008, 5:39 PM

I just returned home from my 7 hour round trip to U of M. I've never left a

hospital or doctor's visit so upset my whole entire life! I took in a diary of

my symptoms the past 8 weeks. I advised how the stiffness has worsened, pain has

been extremely high, feet and ankles hurt and cannot put weight on them or walk.

Knees and tops of feet near toe joints have been warm. Have been running a low

fever. Have troubles using hands. Just at my last visit she stated it was

unspecified connective tissue disorder and that the next step in treatment is

Enbrel or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt me so she

wants to simplify my treatment plan. She tells me to STOP taking my Plaquenil

(yet when I miss one single dose due to forgetting I am in extreme pain). She

told me to keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to

15. What good is this

supposed to

do? I'm barely able to walk. Then she says it has more to do with the FMS at

this point. Then why do I have inflammation the past few weeks, elevated CRP,

SED, WESTEGREN? I don't get it at all. This is one of the top hospitals in the

U.S. And we were supposed to take a more aggressive stance. She didn't even

offer to xray the hands, or feet that I can barely use, and I have 2 toes that

are becoming deformed. I " m at a loss. Do any of you have any idea why this would

have been done? Especially from a medical stand point? I'm ready to call my

family doctor to ask him to go over the last two reports he received from them.

My rheumatologist had called me at home personally to tell me the blood tests

were elevated, shes the one who sent me to Ortho and Sports Med to see different

doctors who also said this is inflammatory. She has me coming back in 8 weeks

yet they no longer treat you if you just have FMS so I am completely lost.

[Guest guest]

,

What is Seronegative? & nbsp; Do you have RA? & nbsp; I know you have had that awful

URI for all those weeks. & nbsp; Wouldn't you think they would have tried to find

out why? The whole year before the RA reared its ugly head, I had back to back,

URI's, Pneumonia 3x, asthma set off, strep. throat, swollen glands, etc. & nbsp; I

was a very bad time for me. & nbsp; My dr. ran every test conceivable, several

times. & nbsp; The RA must have been an underlying condition at that time. He said

he would stay awake at night, trying to find out why I was so darn sick all the

time. In the meantime, my immune system was over stressed, and I really thought

I was dying of at least a brain tumor, or filled with cancer. & nbsp; I was at the

end of my rope, to say the least. & nbsp; I kept thinking, in this day and age,

why can't they find out what is wrong with me???? I was waiting for them to say,

" Time to see a shrink, it's all in your head. & nbsp; After all, that is what a

lot of

drs. say when they can't find what's wrong with you. I think if my dr. ever

said that to me, I would have had the " big stroke " right in his office " & nbsp;

Let him try to explain that to my husband, who would have killed him!!! & nbsp; I

am glad that dr. didn't say that to you today. & nbsp; I always say to everyone,

" They better watch out when dealing with a woman near mid-life, or going through

the change!!!!!! & nbsp; It is not funny , and I wished I lived near you

in Michigan. & nbsp; I feel so bad about that wasted, frustrated office visit.

The help treated you better, remembered who you are, and the dr. could have

cared less, as you were treated like a number. & nbsp; I bet your Rheumy will be

upset about when she finds out how they were to you. & nbsp; We wait and wait for

our appt. days, we trek forever to get there, and then they blow you out of the

water, without a thought in the world. & nbsp; Shame on them!!!!! & nbsp; I can't

imagine her taking away your meds. & nbsp; She must have Brain Fog! & nbsp; What is

the reason she wants you back in 8 weeks? & nbsp; To do what for you? & nbsp; I

think & nbsp; your reg. dr. will have a new avenue for you to take. & nbsp; How can

you have faith in the dr. you saw today, in 8 weeks? & nbsp; Oh, it still makes me

speechless.......

More hugs,

Barbara

From: stephanie & lt;stephieann2 & gt;

Subject: [ ] Today's rheumatology visit

RA-Support@gro ups.com

Date: Monday, June 2, 2008, 5:39 PM

I just returned home from my 7 hour round trip to U of M. I've never left a

hospital or doctor's visit so upset my whole entire life! I took in a diary of

my symptoms the past 8 weeks. I advised how the stiffness has worsened, pain has

been extremely high, feet and ankles hurt and cannot put weight on them or walk.

Knees and tops of feet near toe joints have been warm. Have been running a low

fever. Have troubles using hands. Just at my last visit she stated it was

unspecified connective tissue disorder and that the next step in treatment is

Enbrel or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt me so she

wants to simplify my treatment plan. She tells me to STOP taking my Plaquenil

(yet when I miss one single dose due to forgetting I am in extreme pain). She

told me to keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to

15. What good is this

supposed to

do? I'm barely able to walk. Then she says it has more to do with the FMS at

this point. Then why do I have inflammation the past few weeks, elevated CRP,

SED, WESTEGREN? I don't get it at all. This is one of the top hospitals in the

U.S. And we were supposed to take a more aggressive stance. She didn't even

offer to xray the hands, or feet that I can barely use, and I have 2 toes that

are becoming deformed. I " m at a loss. Do any of you have any idea why this would

have been done? Especially from a medical stand point? I'm ready to call my

family doctor to ask him to go over the last two reports he received from them.

My rheumatologist had called me at home personally to tell me the blood tests

were elevated, shes the one who sent me to Ortho and Sports Med to see different

doctors who also said this is inflammatory. She has me coming back in 8 weeks

yet they no longer treat you if you just have FMS so I am completely lost.

[Guest guest]

I'm completely speechless as well! I feel as if I dreamed the whole thing! This

is the doctor that treated me for a year, left and when she came back began

treating me again. She has always been very thorough, even sending me for bone

scans and liver scans. Yet today, she only checked my trigger points for FMS.

I can't bend my head down or lift my arms or bend my fingers and I told her this

but she didn't try to see me attempt it. I told her of the toes becoming

crooked and she didn't look. She wants to see how I do in 8 weeks just on

Sulfasalazine and 15mgs of Mobic alone. It's just senseless taking away a med,

when we were supposed to be adding a new one! I think she's lost it or she

thinks I am a headcase:) I'm thinking of switching to a new rheumatologist there

but last time I tried that they wouldn't let me. Even the Chief of Staff in

rheumatology got involved. It's a mess, and I'm really shocked this happened

and that she didn't explain anything

Barbara Creedon <bcreedon@...> wrote:

,

What is Seronegative? & nbsp; Do you have RA? & nbsp; I know you have had that

awful URI for all those weeks. & nbsp; Wouldn't you think they would have tried to

find out why? The whole year before the RA reared its ugly head, I had back to

back, URI's, Pneumonia 3x, asthma set off, strep. throat, swollen glands,

etc. & nbsp; I was a very bad time for me. & nbsp; My dr. ran every test

conceivable, several times. & nbsp; The RA must have been an underlying condition

at that time. He said he would stay awake at night, trying to find out why I was

so darn sick all the time. In the meantime, my immune system was over stressed,

and I really thought I was dying of at least a brain tumor, or filled with

cancer. & nbsp; I was at the end of my rope, to say the least. & nbsp; I kept

thinking, in this day and age, why can't they find out what is wrong with me????

I was waiting for them to say, " Time to see a shrink, it's all in your

head. & nbsp; After all, that is what a lot of

drs. say when they can't find what's wrong with you. I think if my dr. ever

said that to me, I would have had the " big stroke " right in his office " & nbsp;

Let him try to explain that to my husband, who would have killed him!!! & nbsp; I

am glad that dr. didn't say that to you today. & nbsp; I always say to everyone,

" They better watch out when dealing with a woman near mid-life, or going through

the change!!!!!! & nbsp; It is not funny , and I wished I lived near you

in Michigan. & nbsp; I feel so bad about that wasted, frustrated office visit.

The help treated you better, remembered who you are, and the dr. could have

cared less, as you were treated like a number. & nbsp; I bet your Rheumy will be

upset about when she finds out how they were to you. & nbsp; We wait and wait for

our appt. days, we trek forever to get there, and then they blow you out of the

water, without a thought in the world. & nbsp; Shame on them!!!!! & nbsp; I can't

imagine her taking away your meds. & nbsp; She must have Brain Fog! & nbsp; What is

the reason she wants you back in 8 weeks? & nbsp; To do what for you? & nbsp; I

think & nbsp; your reg. dr. will have a new avenue for you to take. & nbsp; How can

you have faith in the dr. you saw today, in 8 weeks? & nbsp; Oh, it still makes me

speechless.......

More hugs,

Barbara

From: stephanie & lt;stephieann2 & gt;

Subject: [ ] Today's rheumatology visit

RA-Support@gro ups.com

Date: Monday, June 2, 2008, 5:39 PM

I just returned home from my 7 hour round trip to U of M. I've never left a

hospital or doctor's visit so upset my whole entire life! I took in a diary of

my symptoms the past 8 weeks. I advised how the stiffness has worsened, pain has

been extremely high, feet and ankles hurt and cannot put weight on them or walk.

Knees and tops of feet near toe joints have been warm. Have been running a low

fever. Have troubles using hands. Just at my last visit she stated it was

unspecified connective tissue disorder and that the next step in treatment is

Enbrel or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt me so she

wants to simplify my treatment plan. She tells me to STOP taking my Plaquenil

(yet when I miss one single dose due to forgetting I am in extreme pain). She

told me to keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to

15. What good is this

supposed to

do? I'm barely able to walk. Then she says it has more to do with the FMS at

this point. Then why do I have inflammation the past few weeks, elevated CRP,

SED, WESTEGREN? I don't get it at all. This is one of the top hospitals in the

U.S. And we were supposed to take a more aggressive stance. She didn't even

offer to xray the hands, or feet that I can barely use, and I have 2 toes that

are becoming deformed. I " m at a loss. Do any of you have any idea why this would

have been done? Especially from a medical stand point? I'm ready to call my

family doctor to ask him to go over the last two reports he received from them.

My rheumatologist had called me at home personally to tell me the blood tests

were elevated, shes the one who sent me to Ortho and Sports Med to see different

doctors who also said this is inflammatory. She has me coming back in 8 weeks

yet they no longer treat you if you just have FMS so I am completely lost.

[Guest guest]

>

> From: stephanie & lt;stephieann2 & gt;

> Subject: [ ] Today's rheumatology visit

> RA-Support@gro ups.com

> Date: Monday, June 2, 2008, 5:39 PM

>

> I just returned home from my 7 hour round trip to U of M. I've never

left a hospital or doctor's visit so upset my whole entire life! I took

in a diary of my symptoms the past 8 weeks. I advised how the stiffness

has worsened, pain has been extremely high, feet and ankles hurt and

cannot put weight on them or walk. Knees and tops of feet near toe

joints have been warm. Have been running a low fever. Have troubles

using hands. Just at my last visit she stated it was unspecified

connective tissue disorder and that the next step in treatment is Enbrel

or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt

me so she wants to simplify my treatment plan. She tells me to STOP

taking my Plaquenil (yet when I miss one single dose due to forgetting I

am in extreme pain). She told me to keep on the Sulfasalazine and she

increased the Mobic from 7.5mgs to 15. What good is this

> supposed to

> do? I'm barely able to walk. Then she says it has more to do with the

FMS at this point. Then why do I have inflammation the past few weeks,

elevated CRP, SED, WESTEGREN? I don't get it at all. This is one of the

top hospitals in the U.S. And we were supposed to take a more aggressive

stance. She didn't even offer to xray the hands, or feet that I can

barely use, and I have 2 toes that are becoming deformed. I " m at a loss.

Do any of you have any idea why this would have been done? Especially

from a medical stand point? I'm ready to call my family doctor to ask

him to go over the last two reports he received from them. My

rheumatologist had called me at home personally to tell me the blood

tests were elevated, shes the one who sent me to Ortho and Sports Med to

see different doctors who also said this is inflammatory. She has me

coming back in 8 weeks yet they no longer treat you if you just have FMS

so I am completely lost.

>

>

[Guest guest]

,

Make sure that you speak up at your next appointment and ask why she's

doing what she's doing. Be the squeaky wheel that gets the grease. If

you're having lots of pain before your appointment, call and ask her to

call you back. I hope you finally get the help you need.

Sue

On Monday, June 2, 2008, at 02:44 PM, stephanie wrote:

>

> Thank you so much for caring! It is very frustrating especially since

> SHE is the one that diagnosed the Seronegative and said it was

> important to treat it aggressively. Then today, takes meds away,

> doesn't offer to do any xrays, but ordered a few labs to see why I

> keep getting respiratory infections. She checked some antibodies.

> She even billed todays visit as FMS and not under the connective

> tissue disease code. I've had the FMS for over 8 years and the joint

> pain I don't believe is FMS. I get the warmth and redness. The bad

> flare I had for 8 weeks ended about a week ago now, I tried to get in

> to see her during the flare but she was out of the office. Even my

> family doctor said in the report to him that she was going to treat

> the disorder with methotrexate and more aggressively. It's almost

> like she forgot who I was or something today. Yet, the guy in

> registration always remembers who I am. I go back in 8 weeks but with

> her attitude today it seems pointless.

[Guest guest]

What about contacting the chief again?

I see Dr. Marder. Is that your doc by any chance?

She put me on Plaquinal first saying it was a drug that had been around for a

long time and was very safe. I wish I could have stayed on it but it made my

psoriasis break out all over.

I've seen erratic care in caretakers for my daughter and for me. I think that

their care may be affected by factors of which we're unaware- e.g. business,

illness, etc.

I also get frustrated because I feel that they treat my daughter as a teen or a

kid rather than as a person. Fortunately, we've found a new neurologist who

specializes in pain management at the U of M who is really taking her pain

seriously. She has chronic HA's. Possibly, chronic myofacial pain, too. Let me

know if you would ever like the number for the pain clinic. It can be very hard

to locate when searching through the U of M site.

I hope you see your local doc soon so he can look at what's been written. Maybe

you could get a copy of your records to see what is written so that you could

understand her thinking, right or wrong.

I feel so frustrated for you.

Do you have to stop taking all the meds right away while you work with the

doctors to come to some understanding?

: (

Elaine

[Guest guest]

,

I'm sorry your appointment was so upsetting.

Next time, I would be sure to ask your rheumatologist exactly what she is

thinking about your diagnosis.

From your description, it sounds like she thinks your connective tissue disorder

is under control, and she doesn't want to unnecessarily add meds. She might even

be scaling them back to see what happens.

Not an MD

> RA-Support > From: stephieann2@...> Date: Mon, 2 Jun

2008 10:39:14 -0700> Subject: [ ] Today's rheumatology visit> > I just

returned home from my 7 hour round trip to U of M. I've never left a hospital or

doctor's visit so upset my whole entire life! I took in a diary of my symptoms

the past 8 weeks. I advised how the stiffness has worsened, pain has been

extremely high, feet and ankles hurt and cannot put weight on them or walk.

Knees and tops of feet near toe joints have been warm. Have been running a low

fever. Have troubles using hands. Just at my last visit she stated it was

unspecified connective tissue disorder and that the next step in treatment is

Enbrel or Methotrexate. So here I have gotten worse in the past 12 weeks since

seeing her and what does she do? She tells me she doesn't want to hurt me so she

wants to simplify my treatment plan. She tells me to STOP taking my Plaquenil

(yet when I miss one single dose due to forgetting I am in extreme pain). She

told me to keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to

15. What good is this supposed to> do? I'm barely able to walk. Then she says it

has more to do with the FMS at this point. Then why do I have inflammation the

past few weeks, elevated CRP, SED, WESTEGREN? I don't get it at all. This is one

of the top hospitals in the U.S. And we were supposed to take a more aggressive

stance. She didn't even offer to xray the hands, or feet that I can barely use,

and I have 2 toes that are becoming deformed. I " m at a loss. Do any of you have

any idea why this would have been done? Especially from a medical stand point?

I'm ready to call my family doctor to ask him to go over the last two reports he

received from them. My rheumatologist had called me at home personally to tell

me the blood tests were elevated, shes the one who sent me to Ortho and Sports

Med to see different doctors who also said this is inflammatory. She has me

coming back in 8 weeks yet they no longer treat you if you just have FMS so I am

completely lost.

[Guest guest]

Thank you ..that's what I was thinking too. & nbsp; Next time I have a super

bad flare with warmth and swelling and can't get into her perhaps I can seek ER

treatment or my family physician so they can SEE what is happening. & nbsp; Many

times, my knees can be stiff and the size of a grapefruit and I ice them and

rest and by the time my next visit rolls around they aren't quite as bad as they

were. & nbsp; My family doctor is going to go over the U of M report with

me. & nbsp; She's a great doctor, just some days takes more time to explain things

than others. & nbsp; I'm sure she has my best interest at heart since she did send

me to the liver clinic before wanting to give me any heavier medications

From: & lt;Matsumura_Clan@... & gt;

Subject: RE: [ ] Today's rheumatology visit

Date: Thursday, June 5, 2008, 1:15 PM

,

I'm sorry your appointment was so upsetting.

Next time, I would be sure to ask your rheumatologist exactly what she is

thinking about your diagnosis.

From your description, it sounds like she thinks your connective tissue disorder

is under control, and she doesn't want to unnecessarily add meds. She might even

be scaling them back to see what happens.

Not an MD

& gt; RA-Support@gro ups.com & gt; From: stephieann2 & gt; Date:

Mon, 2 Jun 2008 10:39:14 -0700 & gt; Subject: [ ] Today's rheumatology

visit & gt; & gt; I just returned home from my 7 hour round trip to U of M. I've

never left a hospital or doctor's visit so upset my whole entire life! I took in

a diary of my symptoms the past 8 weeks. I advised how the stiffness has

worsened, pain has been extremely high, feet and ankles hurt and cannot put

weight on them or walk. Knees and tops of feet near toe joints have been warm.

Have been running a low fever. Have troubles using hands. Just at my last visit

she stated it was unspecified connective tissue disorder and that the next step

in treatment is Enbrel or Methotrexate. So here I have gotten worse in the past

12 weeks since seeing her and what does she do? She tells me she doesn't want to

hurt me so she wants to simplify my treatment plan. She tells me to STOP taking

my Plaquenil (yet when

I miss one single dose due to forgetting I am in extreme pain). She told me to

keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to 15. What

good is this supposed to & gt; do? I'm barely able to walk. Then she says it has

more to do with the FMS at this point. Then why do I have inflammation the past

few weeks, elevated CRP, SED, WESTEGREN? I don't get it at all. This is one of

the top hospitals in the U.S. And we were supposed to take a more aggressive

stance. She didn't even offer to xray the hands, or feet that I can barely use,

and I have 2 toes that are becoming deformed. I " m at a loss. Do any of you have

any idea why this would have been done? Especially from a medical stand point?

I'm ready to call my family doctor to ask him to go over the last two reports he

received from them. My rheumatologist had called me at home personally to tell

me the blood tests were elevated, shes the one who sent me to Ortho and Sports

Med to see

different doctors who also said this is inflammatory. She has me coming back in

8 weeks yet they no longer treat you if you just have FMS so I am completely

lost.

[Guest guest]

Take pictures, .

Not an MD

> > From: stephieann2@...> Date: Thu, 5 Jun

2008 10:20:30 -0700> Subject: RE: [ ] Today's rheumatology visit> >

Thank you ..that's what I was thinking too. & nbsp; Next time I have a super

bad flare with warmth and swelling and can't get into her perhaps I can seek ER

treatment or my family physician so they can SEE what is happening. & nbsp; Many

times, my knees can be stiff and the size of a grapefruit and I ice them and

rest and by the time my next visit rolls around they aren't quite as bad as they

were. & nbsp; My family doctor is going to go over the U of M report with

me. & nbsp; She's a great doctor, just some days takes more time to explain things

than others. & nbsp; I'm sure she has my best interest at heart since she did send

me to the liver clinic before wanting to give me any heavier medications

[Guest guest]

--- In , <Matsumura_Clan@...>

wrote:

>

> Take pictures, .

>

>

> Not an MD

>

>

>

> > From: stephieann2@... Date: Thu, 5

Jun 2008 10:20:30 -0700> Subject: RE: [ ] Today's rheumatology

visit> > Thank you ..that's what I was thinking too. & nbsp; Next time

I have a super bad flare with warmth and swelling and can't get into her

perhaps I can seek ER treatment or my family physician so they can SEE

what is happening. & nbsp; Many times, my knees can be stiff and the size

of a grapefruit and I ice them and rest and by the time my next visit

rolls around they aren't quite as bad as they were. & nbsp; My family

doctor is going to go over the U of M report with me. & nbsp; She's a

great doctor, just some days takes more time to explain things than

others. & nbsp; I'm sure she has my best interest at heart since she did

send me to the liver clinic before wanting to give me any heavier

medications

>

>

[Guest guest]

Taking photos is a great idea! I never have thought of that. & nbsp; I have been

tracing my hand so that I can tell when one of the fingers begin to & nbsp; look

different! Thank you so much for caring Barbara! I just finished my antibiotic

from the URI so I begin to take my Sulfasalazine today. & nbsp; I spoke with my

family doctor, he phoned this afternoon. & nbsp; He put me on hold to review what

happened at my visit Monday (he gets the reports really quickly from

them). & nbsp; He said he is completely perplexed as to why she did what she

did. & nbsp; He said that its not even clear in the report. & nbsp; So & nbsp; I bit

the bullet and phoned the nurse (had to leave a message) so I should be getting

a call back tonight or tomorrow. & nbsp; I expressed my concerns about how when I

don't take Plaquenil, the joints begin to act up quite immediately, and that I

have to quit taking the Sulfasalazine almost every other month due to

infections. & nbsp; I also mentioned how my

cane is not always enough to help me walk to see if she has any ideas about

what to do with that. & nbsp; Hopefully, she won't be gruff with me. & nbsp; I just

didn't understand how taking a medication away when I have been stuck in bed

would help:) Hopefully I will have an answer soon:)

From: Barbara & lt;bcreedon@... & gt;

Subject: [ ] Re: Today's rheumatology visit

Date: Thursday, June 5, 2008, 4:24 PM

--- In @gro ups.com, & lt;Matsumura_Clan@ ... & gt;

wrote:

& gt;

& gt; Take pictures, .

& gt;

& gt;

& gt; Not an MD

& gt;

& gt;

& gt;

& gt; & gt; @gro ups.com From: stephieann2@ ... Date: Thu, 5

Jun 2008 10:20:30 -0700 & gt; Subject: RE: [ ] Today's rheumatology

visit & gt; & gt; Thank you ..that's what I was thinking too. & amp;nbsp; Next

time

I have a super bad flare with warmth and swelling and can't get into her

perhaps I can seek ER treatment or my family physician so they can SEE

what is happening. & amp;nbsp; Many times, my knees can be stiff and the size

of a grapefruit and I ice them and rest and by the time my next visit

rolls around they aren't quite as bad as they were. & amp;nbsp; My family

doctor is going to go over the U of M report with me. & amp;nbsp; She's a

great doctor, just some days takes more time to explain things than

others. & amp;nbsp; I'm sure she has my best interest at heart since she did

send me to the liver clinic before wanting to give me any heavier

medications

& gt;

& gt;

[Guest guest]

I am so glad you talked with your family dr. re: your Mon. appt. Even he is

dismayed with your treatment, etc. Drs. have a way of taking care of business,

and I am sure he will look into this, as he has your best interest at heart.

Also glad you called the nurse, and hopefully that dr. will call you. We all

need to know that whatever dr. we are seeing, that they will care enough to

listen, examine us, and do their ultimate best to treat our conditions. After

all, we put our lives in their hands. I know this has been a set back for you,

but I think now that your dr. has seen what happened Mon., things will start to

improve for you in all areas. I too know when I can't walk or stand on these

feet, my cane is not enough, so I use my walker. I don't need another fall!!!!

Please take care of yourself, and I hope you are reading a good book. I am, as

I am still off my feet due to the cancer surgery last week. Had the stitches

out this a.m., my face is

doing great, but the foot is slow to heal. Of course, that is my worst foot

with RA. Figures!! I know things are going to get better for you, so, rest, and

remember, I care, and hugs to you. Barbara

From: Barbara & lt;bcreedon (DOT) com & gt;

Subject: [ ] Re: Today's rheumatology visit

@gro ups.com

Date: Thursday, June 5, 2008, 4:24 PM

--- In @gro ups.com, & lt;Matsumura_ Clan@ ... & gt;

wrote:

& gt;

& gt; Take pictures, .

& gt;

& gt;

& gt; Not an MD

& gt;

& gt;

& gt;

& gt; & gt; @gro ups.com From: stephieann2@ ... Date: Thu, 5

Jun 2008 10:20:30 -0700 & gt; Subject: RE: [ ] Today's rheumatology

visit & gt; & gt; Thank you ..that's what I was thinking too. & amp;nbsp; Next

time

I have a super bad flare with warmth and swelling and can't get into her

perhaps I can seek ER treatment or my family physician so they can SEE

what is happening. & amp; nbsp; Many times, my knees can be stiff and the size

of a grapefruit and I ice them and rest and by the time my next visit

rolls around they aren't quite as bad as they were. & amp;nbsp; My family

doctor is going to go over the U of M report with me. & amp;nbsp; She's a

great doctor, just some days takes more time to explain things than

others. & amp; nbsp; I'm sure she has my best interest at heart since she did

send me to the liver clinic before wanting to give me any heavier

medications

& gt;

& gt;

[Guest guest]

hi stephanie, i hope you feel better soon! i know how you feel, when my ra

flares my joints are warm,swollen & tender to the touch. also drs. appointments

are hard to come by. when you are hurting bad your appt. is like 4 to 6 weeks

later, then you go they ask how are you doing or how have you've been. you say

fine now but a couple a weeks ago i was in PAIN! what can they do, you feel

fine, it's when your having a real bad flare you need the help.. that's great

your pcp is involved in your medical needs, mine is to he's awesome.. i'll keep

you in my prayers. god bless,melyndagamez 6/5/08 6:30p.m.central time

[ ] Today's rheumatology

visit & gt; & gt; I just returned home from my 7 hour round trip to U of M. I've

never left a hospital or doctor's visit so upset my whole entire life! I took in

a diary of my symptoms the past 8 weeks. I advised how the stiffness has

worsened, pain has been extremely high, feet and ankles hurt and cannot put

weight on them or walk. Knees and tops of feet near toe joints have been warm.

Have been running a low fever. Have troubles using hands. Just at my last visit

she stated it was unspecified connective tissue disorder and that the next step

in treatment is Enbrel or Methotrexate. So here I have gotten worse in the past

12 weeks since seeing her and what does she do? She tells me she doesn't want to

hurt me so she wants to simplify my treatment plan. She tells me to STOP taking

my Plaquenil (yet when

I miss one single dose due to forgetting I am in extreme pain). She told me to

keep on the Sulfasalazine and she increased the Mobic from 7.5mgs to 15. What

good is this supposed to & gt; do? I'm barely able to walk. Then she says it has

more to do with the FMS at this point. Then why do I have inflammation the past

few weeks, elevated CRP, SED, WESTEGREN? I don't get it at all. This is one of

the top hospitals in the U.S. And we were supposed to take a more aggressive

stance. She didn't even offer to xray the hands, or feet that I can barely use,

and I have 2 toes that are becoming deformed. I " m at a loss. Do any of you have

any idea why this would have been done? Especially from a medical stand point?

I'm ready to call my family doctor to ask him to go over the last two reports he

received from them. My rheumatologist had called me at home personally to tell

me the blood tests were elevated, shes the one who sent me to Ortho and Sports

Med to see

different doctors who also said this is inflammatory. She has me coming back in

8 weeks yet they no longer treat you if you just have FMS so I am completely

lost.