Re: To Everybody, The Cleveland Clinic..a Nightmare!

[Guest guest]

Hi Rosee,

It's a bad scene when your problems are disregarded because you are

overweight. It's as if they think the extra weight has caused the Arthritis

instead

of the other way round.

Sounds like you would be better sticking to the doctors you like and have a

bit of time for you.

Just a pity they are not closer to you.

Good luck,

[Guest guest]

I'm 38 hurt my back transferring a resident 21/2 years ago. i never had the

heart to let him fall so i let him fall on me. in the beginning i seen a wcb

doc, he said oh its just a back strain go have an m ri, i will call you when i

get the results you will be back to work, mri showed l4,l5,l3 discs bulged.

tears rips . i never heard from tha doc ever again. as my back got worse. Ive

seen 1 neurosurgeon, 2 orthopaedic sure gens,and another wcb doc. they all said

that they do not know why Ive got such pain in my back and why pain from my

lower back , through rite hip, down rite leg, to end of my big toe. no one has

any answers for me,i was put in hosp for 2 weeks last year they gave me 150mg

of morphine shots every 4 hours. i got so sick i was puking blood. the nurses

were only supposed to give me 100mg every 6 hours. i could have died.i came

home. i havetook-enn morphine pills for pain but they made me to moody so now

I'm on Demerol 100mg every 6 hours for pain. a month after i

hurt my back in April 2002 my rite hip was hurting, they have found a bone chip

in it, and now rheumatoid arthritis eating it away. Ive been in hell lthe past

21/2 years hoping someone would find a way to help me nothing. i now am just

about totally disabled from my Independence. i can barely walk some days. i take

Demerol. Tylenol3, flexural, sleeping pills, to help me from day to day. b4 this

happened i was married for 15 to a control ,abusive man. i left him to start my

life over with my 2 kids, i too took nursing course because i knew one day i

would have to work to support me and my kids. i met a wonderful man just b4 i

hurt my back thank god, he cares ununderstands . anyone have any ideas ,docs

they know of because if i have to leave Canada to get the help i need i will!

sorry for the long letter but i need to let some steam off. ericlee

Fran Mishler <fran@...> wrote: Dear Marti, You are so right about how

their " expert " advice does affect

you. I've always thought I was a pretty together person who could handle a

personal attack pretty well, but I have to say this has bothered me more

than I ever thought it would. Not that I ever thought the visit would end

this way...

As far as the pain meds go, I've heard that about Mayo's pain clinic too.

it's so sad when you think they could actually be helping people with their

pain instead of ways to unhook people who don't need to be unhooked. I

realize with narcotic drugs you take a real risk of addiction or dependence

on them. In fact, the dependence is almost unavoidable, but the doctors I

saw couldn't seem to understand that life isn't always worth living when you

are in chronic horrible pain. What I went through with my jaw and still do

from time to time, I wouldn't wish on anyone, not even the three jerks from

the Cleveland Clinic. It was unrelenting facial pain with spasms running

across my face and jaw 24/7. Nothing was coming close to stopping the pain

or even slowing it down. My life wasn't worth living that way and I know

for a fact I never would have made it without pain management and all they

did for me then. It's not like we didn't try other things beside narcotics.

I went through 4 extremely painful stellate ganglion blocks, which consisted

of a 6 inch needle going in through the front of my neck into my spinal

cord. Believe me you have to be desperate for the pain to stop to attempt

one of these, especially after the first one...lol. But of course, I never

got a chance to tell them any of that, not that it would have mattered.

They did ask me at the end of the appointments what I wanted them to do, but

at that point I was so disgusted I just said " I don't want anything from

you. " . I don't think either one of those jerks even realized how upset and

frustrated I was with them. I really don't think it would have mattered to

them either. I don't know if a complaint letter will make any difference or

not, but I guess I have to write one or I'll feel like I'm letting other

people walk in without a clue.

Thanks Marti, for being so supportive. The emails from everyone have been

so great and have helped me more than anything else since all this happened.

Last night I was upset again and couldn't sleep, I mainly think the pain in

my wrist was getting me down, but it's easy to let it all come back at night

when your defenses are down. All I have to do is re read all your emails

and I feel better immediately. Take care and I hope someday I can repay

everyone for all their kindness and prayers. Love, Fran

[ ] Re: To Everybody, The Cleveland Clinic..a

Nightmare!

--Hi Fran,

Quetioning yourself and feeling down is bound to happen after an

experience like yours. That is one reason these types of docs are so

toxic, as the saying goes. Their approach sure doesn't promote

healing. I once started to question myself and almost felt crazy

after 5 docs told me the fusion in my neck was congenital and not

relate to pa. Hello...it wasn't there the last time they xrayed. I

went to Mayo after that and was scared of another big let down but

the doc put the xray up and explained it was part of pa spondylitis.

when I mentioned o a doc that it had taken 5 docs to get a correct

diagnoses(bad judgement on my part to mention it)they accused me o

being a doctor hopper and said I probably burned the other ones out.

It MUST be my fault...irritating...

So...If Larry or Moe develop this stuff(pa) we'll tell them they

don't need pain pills because Curly said looking at a sunset produced

the same effect as morphine...LOL!

One thing about Mayos...their pain cinic is designed to get people

OFF pain meds. I think they take a conserative route on the meds in

that way. I didn't get into any trouble with the docs I saw though.

it wasn't why I was there and they specifically asked...what would

you like us to do for you....then they did it.

Hang in...they are the clueless ones..not you,

Marti

[Guest guest]

--Hi lee,

welcome! You sure do have a lot to deal with. I hate it when the

docs say they don't know why we are in pain...ummm...you mentioned at

least several painful conditions.I don't know a whole lot about ra

except is is very similar to pa and the treatments are virtually

thesame. Unfortunatey, the disease can eat away bone and quickly.

also, have you had a lot of prednisone? That is another thing

notorious for eating away bone.

Hope you find some ideas and comfort here,

Marti

- In , brenda stein

<leelioness662002@y...> wrote:

> I'm 38 hurt my back transferring a resident 21/2 years ago. i

never had the heart to let him fall so i let him fall on me. in the

beginning i seen a wcb doc, he said oh its just a back strain go have

an m ri, i will call you when i get the results you will be back to

work, mri showed l4,l5,l3 discs bulged. tears rips . i never heard

from tha doc ever again. as my back got worse. Ive seen 1

neurosurgeon, 2 orthopaedic sure gens,and another wcb doc. they all

said that they do not know why Ive got such pain in my back and why

pain from my lower back , through rite hip, down rite leg, to end of

my big toe. no one has any answers for me,i was put in hosp for 2

weeks last year they gave me 150mg of morphine shots every 4 hours. i

got so sick i was puking blood. the nurses were only supposed to give

me 100mg every 6 hours. i could have died.i came home. i havetook-enn

morphine pills for pain but they made me to moody so now I'm on

Demerol 100mg every 6 hours for pain. a month after i

> hurt my back in April 2002 my rite hip was hurting, they have

found a bone chip in it, and now rheumatoid arthritis eating it away.

Ive been in hell lthe past 21/2 years hoping someone would find a

way to help me nothing. i now am just about totally disabled from my

Independence. i can barely walk some days. i take Demerol. Tylenol3,

flexural, sleeping pills, to help me from day to day. b4 this

happened i was married for 15 to a control ,abusive man. i left him

to start my life over with my 2 kids, i too took nursing course

because i knew one day i would have to work to support me and my

kids. i met a wonderful man just b4 i hurt my back thank god, he

cares ununderstands . anyone have any ideas ,docs they know of

because if i have to leave Canada to get the help i need i will!

sorry for the long letter but i need to let some steam off. ericlee

>

> Fran Mishler <fran@m...> wrote: Dear Marti, You are so right about

how their " expert " advice does affect

> you. I've always thought I was a pretty together person who could

handle a

> personal attack pretty well, but I have to say this has bothered me

more

> than I ever thought it would. Not that I ever thought the visit

would end

> this way...

>

> As far as the pain meds go, I've heard that about Mayo's pain

clinic too.

> it's so sad when you think they could actually be helping people

with their

> pain instead of ways to unhook people who don't need to be

unhooked. I

> realize with narcotic drugs you take a real risk of addiction or

dependence

> on them. In fact, the dependence is almost unavoidable, but the

doctors I

> saw couldn't seem to understand that life isn't always worth living

when you

> are in chronic horrible pain. What I went through with my jaw and

still do

> from time to time, I wouldn't wish on anyone, not even the three

jerks from

> the Cleveland Clinic. It was unrelenting facial pain with spasms

running

> across my face and jaw 24/7. Nothing was coming close to stopping

the pain

> or even slowing it down. My life wasn't worth living that way and

I know

> for a fact I never would have made it without pain management and

all they

> did for me then. It's not like we didn't try other things beside

narcotics.

> I went through 4 extremely painful stellate ganglion blocks, which

consisted

> of a 6 inch needle going in through the front of my neck into my

spinal

> cord. Believe me you have to be desperate for the pain to stop to

attempt

> one of these, especially after the first one...lol. But of course,

I never

> got a chance to tell them any of that, not that it would have

mattered.

>

> They did ask me at the end of the appointments what I wanted them

to do, but

> at that point I was so disgusted I just said " I don't want anything

from

> you. " . I don't think either one of those jerks even realized how

upset and

> frustrated I was with them. I really don't think it would have

mattered to

> them either. I don't know if a complaint letter will make any

difference or

> not, but I guess I have to write one or I'll feel like I'm letting

other

> people walk in without a clue.

>

> Thanks Marti, for being so supportive. The emails from everyone

have been

> so great and have helped me more than anything else since all this

happened.

> Last night I was upset again and couldn't sleep, I mainly think the

pain in

> my wrist was getting me down, but it's easy to let it all come back

at night

> when your defenses are down. All I have to do is re read all your

emails

> and I feel better immediately. Take care and I hope someday I can

repay

> everyone for all their kindness and prayers. Love, Fran

[Guest guest]

Dear Zoella,

Well I did have to deal with 3 doctors during my visit, but I still think

your story " beats " mine. (Not that this is a contest I want to win or

anything) I hope you decided to report him to the AMA. His actions sound

almost criminal if you ask me. Where I think my doctors were at the worst

just ignorant and uncaring, yours sounds almost evil. He is the last person

that should be treating ill people. We all feel more vulnerable when we are

sick and so often our self esteem drops just from dealing with being ill.

So it's easy to " let " these things happen to us and wonder later why did we

put up with it...

I know that my personality has changed a lot since I first got sick 5 years

ago. I used to laugh a lot more, (thank goodness we have in the

group...lol), was more out going and almost always had a positive attitude.

Now I find I have to fight to do all of those things that once came so

naturally to me.

Going over what happened to me at the Clinic in Naples has made me see that

it is still up to me and I still hold the power to be happy. I refuse to

let the 3 doctors (or 3 stooges as called them) take away anything

else from me. Before I saw them, I was on an upward path, feeling better

almost every day from taking Arava. My spirits were up, I have been able to

work on my glass more, and even designed a new web page for my glass. When

I got back from the trip, I didn't want to do anything and knew I was

getting depressed all over again. All the emails from everyone helped me

see that we all have these stories and somehow we do get stronger from all

of our trials that happen to us along the way. Sometimes I would just like

to skip all these trials and have a " normal " life, but I don't think anyone

really does have a normal life. They just deal with different problems than

we do.

Anyway, take care of yourself and try not to over do it. That is so easy to

do when something makes you feel better for the first time in a long time.

You feel like a kid going out for recess and find you can't wait go out

again. Thanks for sharing your story. I'm sure it's not easy to tell it

over and over, but I know it has helped someone in our group today. Love,

Fran

[Guest guest]

In a message dated 9/21/2004 7:23:15 AM Eastern Standard Time,

mlw402@... writes:

Mayo has strict rules as to how their physicians should treat

patients and a way to lodge a complaint if you feel hassled or abused

in any way. I almost wanted to cry with relif when I went there.

Everyone was so kind and respectful and sadly I was not used to that

This was my experience too...everyone, from the people at the check in to

the people in the labs to the doctors were so nice and respectful. They take

incredible notes and computerize them immediately so each subsequent doctor

you see can pull up the notes on screen. I brought copies of all of my notes

to the doctors at home and was shocked to read that some of the doctors even

described emotional status...ie " the patient is a very pleasant 33 year old

who is understandably distressed about her condition " ...I felt I got great care

there (I was at the one in ville). I was mainly going to get a

second opinion about not being able to take the biologics (which the docs at

Mayo

confirmed) but got a lot of additional info while there. For example, the

hematologist set new levels for my iron/ferritin (I have pernicious anemia as

well as PA) because he said patients with PA have challenges with iron

absorption, and that combined with the pernicious anemia means that my " target "

levels should be higher than the average patient. Same with the

endocrinologist

I saw...

I really do recommend Mayo for anyone with multiple illnesses...they are

really specialized to handle that, both from a personnel standpoint and from a

logistical standpoint (visibility of the notes to all doctors) and from a

convenience standpoint...I saw 4 specialists, had Xrays and bloodwork all in 3

days...imagine trying to do that at home!

[Guest guest]

In a message dated 9/21/2004 11:36:48 AM Eastern Standard Time,

fran@... writes:

I also figured that

a local hospital only 4 hours away would be easier on me and my family than

flying to another state.

Hi Fran...if you do consider Mayo in ville, there are 2 hotels there,

one inside the clinic and one right across the parking lot...it was

unbelievably convenient...its best to go on a Mon or Tues so they can get all of

your

appts in the same week.

[Guest guest]

Dear , Thanks so much for the upbeat email on the Mayo clinic. I

have to say that I have heard nothing but good things about Mayo's. I did

call the Mayo clinic in ville some time ago, but they referred me to

their office in MN. They don't have anyone in Florida that specializes in

Erythromelalgia, which is one of my biggest problems. They were very

helpful on the phone and I have to say I had trouble at the Cleveland Clinic

from the very beginning. I was amazed when I read all the test they ordered

on you and no one even tried to take my blood. They did take my blood

pressure at each doctor's office and weigh me 3 times, which got sort of

annoying. I mean the visits were only 5 minutes apart, and things shouldn't

have changed that much in one hour, but I went along with it.

Right now I'm not ready to take on another Clinic, but I'm sure I will be in

the future. It's good to hear the " good doctor " stories for a change.

Thanks again, Fran

From: rachelviognier@... [mailto:rachelviognier@...]

Sent: Tuesday, September 28, 2004 3:29 PM

Subject: Re: [ ] Re: To Everybody, The Cleveland Clinic..a

Nightmare!

In a message dated 9/21/2004 7:23:15 AM Eastern Standard Time,

mlw402@... writes:

Mayo has strict rules as to how their physicians should treat

patients and a way to lodge a complaint if you feel hassled or abused

in any way. I almost wanted to cry with relif when I went there.

Everyone was so kind and respectful and sadly I was not used to that

This was my experience too...everyone, from the people at the check in to

the people in the labs to the doctors were so nice and respectful. They

take

incredible notes and computerize them immediately so each subsequent

doctor

you see can pull up the notes on screen. I brought copies of all of my

notes

to the doctors at home and was shocked to read that some of the doctors

even

described emotional status...ie " the patient is a very pleasant 33 year

old

who is understandably distressed about her condition " ...I felt I got great

care

there (I was at the one in ville). I was mainly going to get a

second opinion about not being able to take the biologics (which the docs

at Mayo

confirmed) but got a lot of additional info while there. For example,

the

hematologist set new levels for my iron/ferritin (I have pernicious anemia

as

well as PA) because he said patients with PA have challenges with iron

absorption, and that combined with the pernicious anemia means that my

" target "

levels should be higher than the average patient. Same with the

endocrinologist

I saw...

I really do recommend Mayo for anyone with multiple illnesses...they are

really specialized to handle that, both from a personnel standpoint and

from a

logistical standpoint (visibility of the notes to all doctors) and from a

convenience standpoint...I saw 4 specialists, had Xrays and bloodwork all

in 3

days...imagine trying to do that at home!