doctors

[Guest guest]

Hi Aprle,

A doctor actually told you women were too much trouble? That is

not good! I hope your new doctor is a good one. I was very

intimidated by doctors when I was younger and I know that was

part of the problem. I did not complain enough. Don't let a

doctor tell you that you are just a " nervous young mother " . I

let them do that to me. I was greatly frustrated and scared to

death. I was having panic attacks so bad that I always had to

have someone with me. I felt like I was in prison. If the

doctor would have recognized that I did have some real health

issues I am sure I would have been fine. I started to believe

that I was imagining things. I am a very down to earth person.

My mom always said you could drop a bomb next to me and it would

not bother me! Which was true. I just do not know why no one

recognized that I was having problems.

My psoriasis did improve while I was pregnant. It was after my

second daughter was born that I had it so bad. I ended up with

infected legs from it.

Don't take no for an answer and don't let them push you around

just because you are young!

Lee Ann

>>>>>Not much! I'm on my third doctor. Finally a female. The

last male Dr. I

saw told me that woman were so much trouble because they wanted

to have

babies and you had to stop their medication.....yadda yadda

yadda! Ugh!

Aprle<<<<

[Guest guest]

Why does it seem that all of us who are successfully communicating with our

doctors are doing it with FEMALE ones? Me too! And she is the only one who

takes all the time she needs to listen to me and be patient with me and hear

me out and offer me samples and stuff. The He's never did! Well, except

for her hubby who is also my husband's doctor and a coronary/pulmonary

specialist who treats me for my asthma - oh yeah that reminds me - anybody

out there on this list have to put up with that one too the big ASTHMA?

Just wondering.

Helen

[Guest guest]

Patty

It looks to me like your RD is not there for you and does not seem to care when

or if she gets back to you. If you have another RD in the area it might be a

good idea to see another. I had one who was not taking care of me. I only saw

him twice but could tell he had no interest and did not know what to do as he

admitted at the first visit that he had not ever had a patient with PS. I have

checked my insurance book and will have to travel to the next county but am

planning on making an appointment to see them. Hopefully someone there will know

what to do but before I even see them i am going to ask.......when I

call..........IF they have treated PA before. You need to have faith in your

doctor and it does not sound like she has done anything to make you feel secure

in her treatments and is not there when needed.

Just my opinion. Peace and have a painfree day.

Verna

My question: should I continue seeing the RD when the medications

seems to make me sicker? I'm seriously considering cancelling my

appointment on the 30th of this month. I'm beginning to distrust the

RD's judgment.

What say y'all?

patty b in the Pineywoods of East Texas

[Guest guest]

In a message dated Sat, 20 Jul 2002 12:21:30 PM Eastern Standard Time,

pattybacon@... writes:

> My question: should I continue seeing the RD when the

> medications

> seems to make me sicker?

Patty - my opinion is that you can't let anyone but a rheumatologist treat PA.

It's far to complex for a primary to handle. Maybe you just need a different

rheumy. See if you can find one with other PA patients.

Good luck,

[Guest guest]

-Patty,

If you do not have confidence in your rhuematologist, I believe you

should change doctors. It took me three different doctor and ten

years to return to an active life. Belief in your doctor is vital to

PA patients. No one treatment works for all.

Joe

[Guest guest]

Patty

i never did tolerate mtx... i puked a lot... and

zofran, to prevent nausea made me so tired, i could

barely function... question everything, do lots of

research, and if you're not comfortable... definitely

change your dr.... i highly recommend finding a

teaching hospital or medical school.... even a

specialist on a military base... anyone that is

teaching or researching rheumetology will have a

better idea than most drs.

[Guest guest]

Hi,

>

> Someone once posted a link for finding doctors in your area who

deal

> with apergers. Does anyone have that link?

>

> Thanks,

> Terry

Dear Terry,

I am not sure what the other list was or who posted it but there is a

list available at www.aspergers.com. The webhost Dr. R. Kaan Ozbayrak

(His bio. is on the website) for this site does put a disclaimer that

he does not guarantee the quality of the physician listed but that

they have stated that they have experience with AS. Hope that this is

helpful.

Lydia

[Guest guest]

Here you go: It's just been updated. Pam

<A HREF= " http://www.aspergers.com/asplist.htm " >ASPERGER'S DISORDER CLINICIANS

LIST</A>

[Guest guest]

-Hi ,

Amen to everything you said ! Thank God for your GP. He sounds

wonderful! I have a dermie who is wonderful. She keeps me encouraged

and going on the right track. The really good Docs help make up for

the others. It sounds like many people in our group do have great

Rheumies so we are just unlucky with who is available to us.

I am sooooooooooo sorry your family doesn't understand your

illnesses. Remember: you are not alone. You have all of us. I have

been through some of the same issues. I agree the lack of support

and understanding from loved ones can hurt more than the disease

itself.

Sounds like you have megastuff going on right now. I would ask for a

chair that fits: don't think you even have to mention the PA.(work) I

don't know what to say about cradling the phone-that would kill my

neck. Can you furnish your own headset? I know that should not be

necessary because employers are required to make small adaptations

but I am trying to respect your wish to be low key. I don't

know...maybe yout Doc recommended something ergonomically balanced

which it seems everyone is into these days.

Mayo Clinic is in Rochester, Minnesota. I don't know if your

insurance would pay or if it did if you would need a referral(like

from that wonderful GP) I have medicare because I am disabled and I

was able to self refer, just called up and said I needed a thorough

rheum exam from someone with knowlege of PA. Took about a month to

get in. Sounds like you have too much going on for such a trip but

it might be something to keep in mind. They have 35 Rheumatologists

on staff there. They are known for being conservative in their

approach....but they sure diagnosed me well and took the fibro very

seriously.

Again, I am sorry you are having a rough time..sounds like you need

to take it one day at a time right now...I have been there.

Take Care,

Marti

[Guest guest]

Marti,

Sorry this is a bit late. I have alot going on since I started this new job. I

commute 1 hour each way but hopefully we will be moving soon. It is especially

hard since driving aggravates my sacroiliitis and bursitis. My stupid rheumy's

office screwed up the orders for my MRI and the imaging place took the wrong

MRI. So now I have to get another one on my SI joints. I am waiting to get my

MRI approved again (it took a week last time and another week to get the appt.).

My rheumy won't send me to the pain clinic until he gets the results. I am

furious because he initially said he would be surprised if the x-rays showed any

change and they did. It's obvious my arthritis is active because I can feel the

pain in my SI joint and it shoots down the back of my thigh. It's excruciating

to stay seated at work or while driving. Now I have to wait a couple of weeks

more. I don't understand why he can't just send me to the pain clinic now and

we can decide on switching my meds after he gets the results. He said that he

needs to find out if the pain is coming from the arthritis, the bursitis or the

trigger points. I guess his reasoning is that he needs to know where I need the

steroid injections or nerve blocks. I think it's besides the point since my GP

doesn't want me to have anymore steroids (I've been on plenty this past year).

I am wondering if I should bypass the rheumy and ask my GP to refer me to a pain

clinic. I told the med. asst. at my rheumy's office that I am in terrible pain

and can't wait much longer and he just blew me off. He said that getting the

MRI won't stop my pain so I don't understand why we are waiting to address my

pain. I am going to apply for disability too. Since I only work 20 hours a

week I think I can still apply.

My family is getting better. My mom has been doing things to help me out. I

had a talk with my husband and explained to him why the doctors never " fix " me

and that I will always have PA. I told him I might get better, I might get

worse but it will never go away.

I got a headset at work. Turns out the chair went down too. The problem was

that I don't weigh enough to make it go down! I am going to bring a lumbar

support pillow for my back. All of that doesn't help my SI pain though.

Thanks and take care,

[Guest guest]

Hi ,

Wow! you have been busy. Way to go with work and family. What a nice

problem to have, not weighing enough for the chair to go down. I go

around and around with my Rheumies here about whether my arthritis

is " ACTIVE " Maybe we have the same Docs and they fly back and forth

from Nebraska to Texas . The pain is definitely MORE with a

flareup than just residual joint damage. We can tell. Think it would

be OK for you to get something for pain grom GP until MRI can be

done. Sorry they blew you off at Rheumies. They must not have ever

felt it. I also get frustrated when the Docs insist on determining

if it is PA or Fibro. Sometetimes I just want to scream:HELLO it is

both. I have both of them and they both hurt. Anyway, MRI may show

them if you have sciatica going on. Not sure what they are looking

for.

If you are applying for Social Security disability I don't think it

will go thru for you if you are working 20 hours a week. It's a

wierd system. After it is determined we are disabled we are able to

work part time. Almost have to quit working while applying which

doesn't help with money situation. I am able to work part time but

was not able to work at all for awhile. It took 4 months for mine to

go through and I think I was one of the lucky ones. They asked for

hand x-rays and my hand x-rays are shocking but not the main reason I

am unable to work full time.

Keep up the good work

Take Care,

Msarti

[Guest guest]

--

I really need a headset at work. What kind do you have? Is it easy to hook up

to the phone? Does it give you a headache or totally destroy you hair?

Thanks in advance, Cheri

[Guest guest]

Marti,

My GP had prescribed lortab for my pain. 3 weeks ago we increased it from 2

pills to 3 pills a day. That just doesn't cut it. Sometimes it doesn't even

touch the pain at all. I am afraid to complain again that it is not working. My

previous rheumy would yell at me for getting pain medication from a pain

specialist. I am paranoid to even discuss pain meds with any doctor because of

that experience. My GP even told me that pain meds are to increase the quality

of life so I know I shouldn't worry.

I am going to the SS office this week to get the papers for disability. Since I

see my GP on the 11th I will talk to him about it then. I will also start PT

this week. I have to do something to start feeling better. I can't stand this

pain anymore. It is completely unbearable. I figure if I don't start feeling

better, even a little bit, before the appt. on the 11th then I will apply for

disability. If I have to quit working part time then I might have to wait until

we are more financially stable. Next month we won't have to pay for our cobra

insurance so that might help alot. Kinda stupid because if I could afford to

not work then I wouldn't need disability. 4 months is pretty quick to have it

go through. Most people I talk to say it can take 6 to 18 months. Did you have

an appeal or did it go straight through?

thanks,

[ ] Re: doctors

Hi ,

Wow! you have been busy. Way to go with work and family. What a nice

problem to have, not weighing enough for the chair to go down. I go

around and around with my Rheumies here about whether my arthritis

is " ACTIVE " Maybe we have the same Docs and they fly back and forth

from Nebraska to Texas . The pain is definitely MORE with a

flareup than just residual joint damage. We can tell. Think it would

be OK for you to get something for pain grom GP until MRI can be

done. Sorry they blew you off at Rheumies. They must not have ever

felt it. I also get frustrated when the Docs insist on determining

if it is PA or Fibro. Sometetimes I just want to scream:HELLO it is

both. I have both of them and they both hurt. Anyway, MRI may show

them if you have sciatica going on. Not sure what they are looking

for.

If you are applying for Social Security disability I don't think it

will go thru for you if you are working 20 hours a week. It's a

wierd system. After it is determined we are disabled we are able to

work part time. Almost have to quit working while applying which

doesn't help with money situation. I am able to work part time but

was not able to work at all for awhile. It took 4 months for mine to

go through and I think I was one of the lucky ones. They asked for

hand x-rays and my hand x-rays are shocking but not the main reason I

am unable to work full time.

Keep up the good work

Take Care,

Msarti

[Guest guest]

-Hi ,

I know that awful feeling of reaching a breaking point handling the

pain. I am frustrated with my own fibro right now. Like yours, none

of the familiar treatments seem to work. Sounds like you have good

plans in mind. I am hoping the MRI will show something that will

help your pain treatment(I think) Don't wish Sciatica on you but

maybe they could take it from there if you have it.

I understand I was one of the lucky ones with my disability going

through in only 4 months. I got it on the first try and didn't need

any kind of hearing or appeal. I also was not required to see any

State Doctors. Hardly anyone here could believe it...they kept

saying.No one in Nebraska ever gets it for arthritis. I attribute

this to my internist from Dubuque,Iowa who was one in a million when

it comes to doctors and people. He had known me since I was 19 years

old, had watched me struggle and try numerous treatments. He often

talked to me about my work and really really knew I would keep doing

it if I could. He wrote a personal letter along with filling out the

required forms and followed up with a phone call to the examiner

which it clearly said not to do. He genuinely cares about almost

everyone he meets so he ended up getting to know the examiner a

little and completely sypathizing with thre amount of work she had to

do. I am about to start crying I miss him so much and have never

found another Doc like him. He is retired now.

I was also lucky in that I was able to save up some money to live on

while the disability was going thru. It went really fast but I am so

thankful I had a cushion to rely on.

Didn't answer your question about excercise. The only thing that

has ever worked for me is water exercise. I was in a fibro class and

many people were lifting weights, doing Tai Chi, Pilates,etc. I

didn't even come close to being able to do these. Must be different

subsets and severities of fibro plus they didn't have a little thing

like PA to complicate their treatment.

Good Luck ! you do a good job of hanging in when there is so

much going on at once!

Marti

[Guest guest]

Thanks Marty for the tips on getting SSDI. Glad you had such a wonderful doc.

I feel lucky to have found my GP. Now if I could only get a rheumy on my side I

would be set!

What is pilates?

thanks,

[ ] Re: doctors

-Hi ,

I know that awful feeling of reaching a breaking point handling the

pain. I am frustrated with my own fibro right now. Like yours, none

of the familiar treatments seem to work. Sounds like you have good

plans in mind. I am hoping the MRI will show something that will

help your pain treatment(I think) Don't wish Sciatica on you but

maybe they could take it from there if you have it.

I understand I was one of the lucky ones with my disability going

through in only 4 months. I got it on the first try and didn't need

any kind of hearing or appeal. I also was not required to see any

State Doctors. Hardly anyone here could believe it...they kept

saying.No one in Nebraska ever gets it for arthritis. I attribute

this to my internist from Dubuque,Iowa who was one in a million when

it comes to doctors and people. He had known me since I was 19 years

old, had watched me struggle and try numerous treatments. He often

talked to me about my work and really really knew I would keep doing

it if I could. He wrote a personal letter along with filling out the

required forms and followed up with a phone call to the examiner

which it clearly said not to do. He genuinely cares about almost

everyone he meets so he ended up getting to know the examiner a

little and completely sypathizing with thre amount of work she had to

do. I am about to start crying I miss him so much and have never

found another Doc like him. He is retired now.

I was also lucky in that I was able to save up some money to live on

while the disability was going thru. It went really fast but I am so

thankful I had a cushion to rely on.

Didn't answer your question about excercise. The only thing that

has ever worked for me is water exercise. I was in a fibro class and

many people were lifting weights, doing Tai Chi, Pilates,etc. I

didn't even come close to being able to do these. Must be different

subsets and severities of fibro plus they didn't have a little thing

like PA to complicate their treatment.

Good Luck ! you do a good job of hanging in when there is so

much going on at once!

Marti

[Guest guest]

---

>

> What is pilates?

>

> thanks,

>

>

>

Hi ,

Pilates is a set of exercises done mostly on mats designed to

strengthen core muscle groups. Here it is taught in classes YWCA,etc.

I guess it has been around for years but recently regained

popularity. I have talked to prople with both fibro and PA who say

it helped them tremendously. I have not been able to work up to it

yet. Probably other group members who have experience with it. Does

it help anyone?

Marti

[Guest guest]

Marti & ,

I have a Pilates table at home. It is approximately 18 " off the floor and

has a cords & a moving " seat platform " it also has round " shoulder " holders for

where you put your neck. You can do a number of slow & easy stretching,

without putting weight on any of your joints. I actual " run " on it for at least

3

minutes per day? You lay on the platform, put your toes on the u shaped bar

at the bottom of the bench and then raise your heels in a running motion

(barefoot of course). I know when I do the pilates I feel like I look taller

and

stand straighter. I get a lot of back pain, and the stretching seems to help

because it strengthens the front of me which supports the back of me. Hope

this makes sense, it really is a great tool

Gentle Hugs,

Carol M>

[Guest guest]

Marti,

Thanks for the explanation of Pilates. I am going to check into it. I'll be

back in PT next week. It's only like my 15th time..I'll be seeing a

chiropractor too so maybe that will help.

take care,

[Guest guest]

Carol,

How much was the Pilates table? Do you remember where you got it?

thanks,

[Guest guest]

> ,

> I ordered it from TV on QVC. I think it is about $200.00 now,

> and if you catch it right can be stretched out into 3 or 4

> interest free payments. Check online for QVC. I hope this

> is ok to print, it is not an advertisement, just a fact.

> Thanks,

> Carol M.

As long as you're not personally selling whatever it is you're

referring to and don't benefit financially from it's sale, it's

perfectly Ok to recommend anything you want.

-- Ron

[Guest guest]

> ..., since the first doctor didn't do

> Remicade. I didn't know if it was appropriate to just put his name

> out there and ask if anyone else was using him or not. I live

> in the Dallas area.

>

> Jackie

Yes Jackie, it's appropriate to post doctor's names and contact

information here. This is a discussion group and doctors are a big

part of our lives, so I personally see no reason to refrain from

discussing our doctors ( has the final word on this of

course).

By the way, most hospitals have Remicade infusion centers, so even if

your doctor doesn't do Remicade infusions in his office, he should be

able to send you to a hospital or clinic that does. That way there

would be no need to change doctors.

-- Ron

[Guest guest]

hi everyone, first off to Fran....YIPPPPEEEE!!! I am so delighted for you and

your good news re your lungs!! You go girl!!!

Re Drs, I saw a new Derm today. I told her how I felt I had been bounced around

from the previous Derm to the Rheum and back again. She looked me dead in the

eye and said " I AM NOT AFRAID OF YOUR DISEASES! " That blew my mind. I was

elated. She wanted to start me on Enbrel. I would like to try this, however, my

health ins sucks when it comes to the Drug coverage and we are not able to

afford the cost of this drug on our own. SOOO, she uses a compounded mixture of

a couple of different P drugs, and has the Pharmacy mix them together. She has

seen amazing results in many of her pts and was very encouraging. She also told

me she understands that P is an emotional issue as well as a physical issue. I

really think I won the Dermatologist lottery with her!!

I pick up the meds tomorrow. The pharmacy had to order some of them. I am

excited to try something new.

take care everyone

annie and the pugherd

[ ] Doctors

It amazes me that so many of you have such valid complaints about your

doctors. How do these people stay in business? I have been so fortunate that

the 4 docs I have seen, so far, all know about PA and it's various strategies

for making us miserable. I was diagnosed quickly, treated aggressively and

continue to receive the necessary support to continue the counterattack. I get

the impression that most of you live in large towns/cities where I would think

you could access the very best medical care. I live in a small rural setting of

which has been said that it is " not the end of the earth but you can see it from

here. " Have any of you tried to files grievances with the proper governing

groups?

I just can't express strongly enough in words how unacceptable some of the

care is and there should be a way to improve it.

I'm getting down from my soap box now. I just wish I could share my docs with

you all.

Cheri

[Guest guest]

In a message dated 5/11/2004 11:26:03 PM Eastern Daylight Time,

annie@... writes:

She has seen amazing results in many of her pts and was very encouraging. She

also told me she understands that P is an emotional issue as well as a

physical issue. I really think I won the Dermatologist lottery with her!!

I pick up the meds tomorrow. The pharmacy had to order some of them. I am

excited to try something new.

Congratulations!!! It is great to hear when someone has a positive visit

with a doctor rather than a negative one. I am interested to know what type of

medication you have been given.

Please keep us posted.

JANET

[Guest guest]

Hi Janet,

just picked up my script so I wanted to let you know about the compound mixture.

It is comprised of Dovonex, Ultravate and Aquaphor. The first 2 are

anti-inflammatory, and the third is the stuff you can buy over the counter in

the skin lotion dept. It is really thick...sort of like Vaseline and is a great

emollient(Sp??!!) for keeping your skin soft. I will be starting it tonight so

I will keep you guys posted on how it works.

I am sort of upset today. Just thought I would share yet another insurance woe.

My husband's company is shopping ins . The prospective new company called me

today and asked lots of questions about my P and Pa. Worst case scenario, I will

be unable to have them pay for any drugs or tx for 12 mos. Best case scenario,

they will rate the policy for me, meaning we will be penalized a certain

percentage of the initial premium and have to pay the extra in order to be

insured. I tell you, I could just cry...like we don't pay enough already, and I

still can't get some of the things I need because they don't cover them!! oh

well, I will stop whining now!!

hope everyone is having a happy and well day

annie and the pugherd

Re: [ ] Doctors

In a message dated 5/11/2004 11:26:03 PM Eastern Daylight Time,

annie@... writes:

She has seen amazing results in many of her pts and was very encouraging. She

also told me she understands that P is an emotional issue as well as a

physical issue. I really think I won the Dermatologist lottery with her!!

I pick up the meds tomorrow. The pharmacy had to order some of them. I am

excited to try something new.

Congratulations!!! It is great to hear when someone has a positive visit

with a doctor rather than a negative one. I am interested to know what type

of

medication you have been given.

Please keep us posted.

JANET

[Guest guest]

Hi Annie,

Snap! I visited a New Derm a couple of days ago and was very impressed. She

reckons she will get the P to disappear. If she does I will worship her for

evermore.Ha, Ha.

Look after yourself,

.