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Who is your Dr. ?

Hi all

Hi all, I am new to this group. I am and am 43 years old. I

have been on human growth hormone for two years now for my CFS and FM.

In the beginning it worked great, but it is not doing so well now.

What is everyone else taking?

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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I would also like to know who your doctor is, what dose of Hgh you

were taking and if you increased it over time. Hgh is the new most

promising treatment from Dr. Cheney that he is trying on a number of

patients. Someone might be able to explain it better, but your

immune system has to be balanced Th1/Th2 to use Hgh effectively.

Mike (, I would really like to hear your whole history because

you are the only person I know of taking Hgh that is a Cheney

patient).

> Hi all, I am new to this group. I am and am 43 years old. I

> have been on human growth hormone for two years now for my CFS and

FM.

> In the beginning it worked great, but it is not doing so well now.

> What is everyone else taking?

>

>

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My Dr. is Dr. Lee in Albany, NY. I am in a experimental program for

five years. Most people are doing very well.

> Who is your Dr. ?

> Hi all, I am new to this group. I am and am 43 years old. I

> have been on human growth hormone for two years now for my CFS and FM.

> In the beginning it worked great, but it is not doing so well now.

> What is everyone else taking?

>

>

>

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Hi Mike,

My Dr. is Dr. Lee in Albany, NY. I have been on HGH for two years now.

I started out at a lower dose and have gradually moved up to 32 units

or .6 mg subcu. My family doctor wanted me on this medicine and found

Dr. Lee and endocrinologist who is doing a study on it.

> I would also like to know who your doctor is, what dose of Hgh you

> were taking and if you increased it over time. Hgh is the new most

> promising treatment from Dr. Cheney that he is trying on a number of

> patients. Someone might be able to explain it better, but your

> immune system has to be balanced Th1/Th2 to use Hgh effectively.

>

> Mike (, I would really like to hear your whole history because

> you are the only person I know of taking Hgh that is a Cheney

> patient).

>

>

>

> > Hi all, I am new to this group. I am and am 43 years old. I

> > have been on human growth hormone for two years now for my CFS and

> FM.

> > In the beginning it worked great, but it is not doing so well now.

> > What is everyone else taking?

> >

> >

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Helen, was it a tornado or just very high winds?? How scarey, I sure am glad your home was left alone.

It is wet and chilly here now, but to really warm up over the week.

The girls do alot better in the summer and late Spring. Amber is the one that the allergies get to quicker than April.

They both are doing well, on Spring Break this week, Amber works again tonite, she really does seem to love it.

I have a lists of dr.'s that I am checking out and seeing if they are on my insurance, I just fine it so hard to trust any Dr. but yes I am working on it.

How are you feeling this morning?? And Ross and In Laws??

When do you see the girls agan??

Take care, Friend, Marsha

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Hey Helen, How are things going there? get the mess cleaned up?? Some storm, huh?? it is warm and sunny here, April has a little friend over and they are outside playing.

Amber loves her job, working for another boy today and she will be off on Sun or at least that is what he claims.

We all are fine here, Their Spring Break is almost over.

How are the girls doing and Ross.

Marsha

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Helen,how are you and Ross feeling today?? Hope less pain for both of you.

We all are doing just fine here. Amber has to work again this afternoon, she loves it.

April is fine, we all are in shorts here today, it is starting to get quite warm here, very windy, though, March is always windy for some reason.

Glad the girls are feeling better, sure hope it lasts for them as well.

They get off another four days the end of the month for easter. We always get our Spring Break at this time of year.

I think we have eight weeks of school left when they return from Spring Break.

Take care. Marsha

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a --

You have such a great attitude. And your daughter sounds very caring.

You and the 'clan' have made it through so many obsticles, this is just

a minor one, I'm sure.

Best wishes!

XO

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Hi ,

Thanks so much for your e-mail, it was smashing to hear from you.

I agree this is just a minor set-back, once Dave finds another job and I do

too after my exams in June, we won't know ourselves. Be positive thats what

my friend Dulcie keeps telling me bless her, she is a good friend and more

like a sister to me also Oliver's Godmother.

I'm sooooo tired at the moment, have had three nights of non-sleep. The

first two nights I was up with Oliver because his legs were hurting and last

evening, he had earache. I took him to see the doc this morning and Ollie

has an ear infection - bless him he's kind of fed up at the moment.

Hope you are well

Take care

Love, Hugs, Health and Happiness

a, Oliver and the clan xx

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enbrel or remicade can be taken while trying to concieve, also prednsione

has a well established safety record during pregnancy as the molecules are

too large to cross the placenta. If you are in Cyprus I dont know if you

can get enbrel or remicade.

It's a good idea not to take nsaids while trying to concieve as they can

interfere with ovulation, causing unruptured follicle syndrome

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Ritu,

so glad to have you here with us. It's unfortunate the reason but glad that you

will know have a source of information, support and venting line.

It's a tough disease but with everyone here caring so much, we can get through

anything.

Hope you find the information and comfort here that you are looking for.

Take care,

Marilyn

mhogg69@...

Hi All

Hi All,

I just joined this group and am so glad that I did. My name is Ritu Gupta,

currently staying in Cyprus with my husband. I was born on 16th August,

1974. Just after my marriage on 27th sept 98, I suffered from this disease

with symptoms like high spiking fever, rash and joint pains. Though all test

were negative but the ESR and Blood counts pointed to this disease with

these symptoms. I was treated with various lines of treatment with

chloroquine followed with Methotrexate with steroid dosage in between. I

also took pain killers regularly. This has been the treatment for the past 3

yrs. But since 1 year too tired of all of these medicines and with

conception in mind I stopped all medicines in Nov, 01. But after 2 months,

the symptoms like body ache and fever returned and I had to continue with

the treatment.

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Hi Ritu Gupa! It's so good to have you as a part of the group I think it was

Jen that gave the answer about the steroids and MTX etc...and that sounded like

an excellent solution. I'm sure you'll talk it over with your doctor, but Jen

is always good because she is SOOOOO knowledgeable about both the illness and

meds with coming up with answers. I don't know enough about the meds with

pregnancy to comment, but I wanted to say hi and welcome you. I wish you the

very best of luck.

Love and Hugs, Kim

Ritu Gupta <ritu_cyp@...> wrote: Hi All,

I just joined this group and am so glad that I did. My name is Ritu Gupta,

currently staying in Cyprus with my husband. I was born on 16th August,

1974. Just after my marriage on 27th sept 98, I suffered from this disease

with symptoms like high spiking fever, rash and joint pains. Though all test

were negative but the ESR and Blood counts pointed to this disease with

these symptoms. I was treated with various lines of treatment with

chloroquine followed with Methotrexate with steroid dosage in between. I

also took pain killers regularly. This has been the treatment for the past 3

yrs. But since 1 year too tired of all of these medicines and with

conception in mind I stopped all medicines in Nov, 01. But after 2 months,

the symptoms like body ache and fever returned and I had to continue with

the treatment.

But I didn't continue with Metho, I currently am just on Steroid Wysolone,

12.5 mg per day. I started with 30 mg in Jan, 01 and gradually reduced to

12.5 mg. I am constantly trying to reduce more bit since few days I had the

fever upto 99 F and feel exhausted with some body ache. I hope this gets

over soon as I really want to get pregnant.

Does somebody know of a good treatment which could be taken on during

pregnancy or while trying to conceive.

All the best to everybody !!!

Have a nice day !!!

bye,

Ritu

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hi ritu

welcome to the club. i think there are several women

of us right now trying to get pregnant, having stills.

we will see what the outcome is. i am on

prednisolone, 5 mg daily, and they oked trying to

conceive. however, i am not menstruating and therefore

cant get pregnant at the time. this could very well be

from the cortisone. they dont know yet.

i wish you the best of luck. sounds like your course

of disease is pretty severe. we were in crete last

year and loved it. i am sure it is just as nice where

you live. i am from germany, my husband is american.

please be patient with yourself as stills and

pregnancy or trying to get pregnant isnt very easy

from what i hear. i am here to listen. you can email

me anytime. good luck

tatjana

--- Ritu Gupta <ritu_cyp@...> wrote:

> Hi All,

>

> I just joined this group and am so glad that I did.

> My name is Ritu Gupta,

> currently staying in Cyprus with my husband. I was

> born on 16th August,

> 1974. Just after my marriage on 27th sept 98, I

> suffered from this disease

> with symptoms like high spiking fever, rash and

> joint pains. Though all test

> were negative but the ESR and Blood counts pointed

> to this disease with

> these symptoms. I was treated with various lines of

> treatment with

> chloroquine followed with Methotrexate with steroid

> dosage in between. I

> also took pain killers regularly. This has been the

> treatment for the past 3

> yrs. But since 1 year too tired of all of these

> medicines and with

> conception in mind I stopped all medicines in Nov,

> 01. But after 2 months,

> the symptoms like body ache and fever returned and I

> had to continue with

> the treatment.

>

> But I didn't continue with Metho, I currently am

> just on Steroid Wysolone,

> 12.5 mg per day. I started with 30 mg in Jan, 01 and

> gradually reduced to

> 12.5 mg. I am constantly trying to reduce more bit

> since few days I had the

> fever upto 99 F and feel exhausted with some body

> ache. I hope this gets

> over soon as I really want to get pregnant.

>

> Does somebody know of a good treatment which could

> be taken on during

> pregnancy or while trying to conceive.

>

> All the best to everybody !!!

>

> Have a nice day !!!

>

> bye,

>

> Ritu

>

>

>

__________________________________________________

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hi tatjana,

thanks for the warm welcome. I hope that u get preg soon. All the Best. Dose

of 5 mg is good even my dr suggested bringing it down to 5 or 7.5 mg would

be ideal, but it was difficult for me. I have not been to crete but have

heard it is beautiful. Cyprus is also nice has everything u could wish for

beaches, parks, moutains. Has it all. Could definitely come here for hols.

I have been trying to conceive from this Jan, so lets hope for the best. My

cycle was quite regular since then usually 29 days, but I don't know what

the problem is since last 2 months its over 31 days, this time it is over

32 , maybe it is cortisone , i am not sure yet. Maybe I have to see dr.

There are few rheumatologist here, not very good too. I am an Indian so

genrally get all my medicines from India.

all the best,

bye,

ritu

Re: Hi All

> hi ritu

>

> welcome to the club. i think there are several women

> of us right now trying to get pregnant, having stills.

> we will see what the outcome is. i am on

> prednisolone, 5 mg daily, and they oked trying to

> conceive. however, i am not menstruating and therefore

> cant get pregnant at the time. this could very well be

> from the cortisone. they dont know yet.

> i wish you the best of luck. sounds like your course

> of disease is pretty severe. we were in crete last

> year and loved it. i am sure it is just as nice where

> you live. i am from germany, my husband is american.

> please be patient with yourself as stills and

> pregnancy or trying to get pregnant isnt very easy

> from what i hear. i am here to listen. you can email

> me anytime. good luck

> tatjana

>

> --- Ritu Gupta <ritu_cyp@...> wrote:

> > Hi All,

> >

> > I just joined this group and am so glad that I did.

> > My name is Ritu Gupta,

> > currently staying in Cyprus with my husband. I was

> > born on 16th August,

> > 1974. Just after my marriage on 27th sept 98, I

> > suffered from this disease

> > with symptoms like high spiking fever, rash and

> > joint pains. Though all test

> > were negative but the ESR and Blood counts pointed

> > to this disease with

> > these symptoms. I was treated with various lines of

> > treatment with

> > chloroquine followed with Methotrexate with steroid

> > dosage in between. I

> > also took pain killers regularly. This has been the

> > treatment for the past 3

> > yrs. But since 1 year too tired of all of these

> > medicines and with

> > conception in mind I stopped all medicines in Nov,

> > 01. But after 2 months,

> > the symptoms like body ache and fever returned and I

> > had to continue with

> > the treatment.

> >

> > But I didn't continue with Metho, I currently am

> > just on Steroid Wysolone,

> > 12.5 mg per day. I started with 30 mg in Jan, 01 and

> > gradually reduced to

> > 12.5 mg. I am constantly trying to reduce more bit

> > since few days I had the

> > fever upto 99 F and feel exhausted with some body

> > ache. I hope this gets

> > over soon as I really want to get pregnant.

> >

> > Does somebody know of a good treatment which could

> > be taken on during

> > pregnancy or while trying to conceive.

> >

> > All the best to everybody !!!

> >

> > Have a nice day !!!

> >

> > bye,

> >

> > Ritu

> >

> >

> >

>

>

> __________________________________________________

>

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Hi All,

Thanks for the warm welcome. I hope that I would be also of some help to you

all to fight this disease. Take care.

bye,

Ritu

Re: Hi All

>

>

> Hi Ritu Gupa! It's so good to have you as a part of the group I think it

was Jen that gave the answer about the steroids and MTX etc...and that

sounded like an excellent solution. I'm sure you'll talk it over with your

doctor, but Jen is always good because she is SOOOOO knowledgeable about

both the illness and meds with coming up with answers. I don't know enough

about the meds with pregnancy to comment, but I wanted to say hi and welcome

you. I wish you the very best of luck.

>

> Love and Hugs, Kim

> Ritu Gupta <ritu_cyp@...> wrote: Hi All,

>

> I just joined this group and am so glad that I did. My name is Ritu Gupta,

> currently staying in Cyprus with my husband. I was born on 16th August,

> 1974. Just after my marriage on 27th sept 98, I suffered from this disease

> with symptoms like high spiking fever, rash and joint pains. Though all

test

> were negative but the ESR and Blood counts pointed to this disease with

> these symptoms. I was treated with various lines of treatment with

> chloroquine followed with Methotrexate with steroid dosage in between. I

> also took pain killers regularly. This has been the treatment for the past

3

> yrs. But since 1 year too tired of all of these medicines and with

> conception in mind I stopped all medicines in Nov, 01. But after 2 months,

> the symptoms like body ache and fever returned and I had to continue with

> the treatment.

>

> But I didn't continue with Metho, I currently am just on Steroid Wysolone,

> 12.5 mg per day. I started with 30 mg in Jan, 01 and gradually reduced to

> 12.5 mg. I am constantly trying to reduce more bit since few days I had

the

> fever upto 99 F and feel exhausted with some body ache. I hope this gets

> over soon as I really want to get pregnant.

>

> Does somebody know of a good treatment which could be taken on during

> pregnancy or while trying to conceive.

>

> All the best to everybody !!!

>

> Have a nice day !!!

>

> bye,

>

> Ritu

>

>

>

>

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Ritu,

You have sure come to the right support group! There is a lot of

knowledge, support and friendship here, WELCOME, Louise.

Ritu Gupta wrote:

>

> Hi All,

>

> Thanks for the warm welcome. I hope that I would be also of some help to you

> all to fight this disease. Take care.

>

> bye,

>

> Ritu

>

> Re: Hi All

>

> >

> >

> > Hi Ritu Gupa! It's so good to have you as a part of the group I think it

> was Jen that gave the answer about the steroids and MTX etc...and that

> sounded like an excellent solution. I'm sure you'll talk it over with your

> doctor, but Jen is always good because she is SOOOOO knowledgeable about

> both the illness and meds with coming up with answers. I don't know enough

> about the meds with pregnancy to comment, but I wanted to say hi and welcome

> you. I wish you the very best of luck.

> >

> > Love and Hugs, Kim

> > Ritu Gupta <ritu_cyp@...> wrote: Hi All,

> >

> > I just joined this group and am so glad that I did. My name is Ritu Gupta,

> > currently staying in Cyprus with my husband. I was born on 16th August,

> > 1974. Just after my marriage on 27th sept 98, I suffered from this disease

> > with symptoms like high spiking fever, rash and joint pains. Though all

> test

> > were negative but the ESR and Blood counts pointed to this disease with

> > these symptoms. I was treated with various lines of treatment with

> > chloroquine followed with Methotrexate with steroid dosage in between. I

> > also took pain killers regularly. This has been the treatment for the past

> 3

> > yrs. But since 1 year too tired of all of these medicines and with

> > conception in mind I stopped all medicines in Nov, 01. But after 2 months,

> > the symptoms like body ache and fever returned and I had to continue with

> > the treatment.

> >

> > But I didn't continue with Metho, I currently am just on Steroid Wysolone,

> > 12.5 mg per day. I started with 30 mg in Jan, 01 and gradually reduced to

> > 12.5 mg. I am constantly trying to reduce more bit since few days I had

> the

> > fever upto 99 F and feel exhausted with some body ache. I hope this gets

> > over soon as I really want to get pregnant.

> >

> > Does somebody know of a good treatment which could be taken on during

> > pregnancy or while trying to conceive.

> >

> > All the best to everybody !!!

> >

> > Have a nice day !!!

> >

> > bye,

> >

> > Ritu

> >

> >

> >

> >

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ette

Its funny you ask that today, as ive been see-sawing between raging hot and

being cold to the point of shaking today! Its so strange, i change between

hot and cold within minutes. It happens a lot to me. Also, im always

freezing cold when everyone thinks the house is warm, then boiling hot when

its cold! I think its a common thing in stills. Anything wierd you can bet

its stills, lol. Kate x

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I deal with this very thing all the time and it drives me crazy. The rest of

the house is in jackets and socks and I'm naked under a sheet sweating buckets

or I'm freezing and have on a nightgown with pants and socks...etc and everyone

else is hot????

I think it's still or I'm going threw the change of life at 32 years old???

Love ya, Kim

klrobinson18@... wrote: ette

Its funny you ask that today, as ive been see-sawing between raging hot and

being cold to the point of shaking today! Its so strange, i change between

hot and cold within minutes. It happens a lot to me. Also, im always

freezing cold when everyone thinks the house is warm, then boiling hot when

its cold! I think its a common thing in stills. Anything wierd you can bet

its stills, lol. Kate x

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ette; I used to experience the same during the years of my fevers being so

bad. I would actually turn purple and broke a tooth on a thermometer once. My

nurses would take away all blankets except for a flannel telling me that

bundling up too much would only drive the fever higher. I think this is from

the Still's fevers also. Hope they stop for you soon, till later, Patty melt

Hi all

Welcome all you new commers. I have a question for anyone here. I have

been getting chills to where I shake and then get real sweaty. My

clothes feel all wet, and my hip hurts and my spine and a few other

places. Is this something with stills or not.

I have stills in my spine and my neck and all over my body but this

chills and sweats are sort of new to me.

ette

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

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With my first flare I had chills and night sweats every night...sounds like

its from Stills to me.

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Well I had it again last night well not last night but early this

morning. Then all wet from when it broke. I am going to see my Rheumy

tomorrow and sure hope she can figure this out.

ette

nycboo@... wrote:

>

> With my first flare I had chills and night sweats every night...sounds

> like

> its from Stills to me.

>

>

>

>

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Good day ette; I believe this to be a very common symtom not only of

Still's but any time you run fevers and when they break, you end up all wet. I

used flannel sheets for years so that would help wick the moisture away when

your fevers break. Good luck keeping them at bay, good day, Melt

ginger sunshine <sweetpeas777@...> wrote: Well I had it again last night

well not last night but early this

morning. Then all wet from when it broke. I am going to see my Rheumy

tomorrow and sure hope she can figure this out.

ette

nycboo@... wrote:

>

> With my first flare I had chills and night sweats every night...sounds

> like

> its from Stills to me.

>

>

>

>

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Hi Pattymelt, Wow yes I have now been using flannel sheets. I am going

to the doctor tomorrow. Right now I'm not on any medication. Do you know

does it say this on the stills disease web page? I wanted to print

something out to bring to the doctors. Every time this has happened to

me before and I would tell my doctor she would say she didn't know why I

did this. I really think it's because I am getting a flare.

Thanks so much,

ette

Boerner wrote:

>

> Good day ette; I believe this to be a very common symtom not only

> of Still's but any time you run fevers and when they break, you end up

> all wet. I used flannel sheets for years so that would help wick the

> moisture away when your fevers break. Good luck keeping them at bay,

> good day, Melt

> ginger sunshine <sweetpeas777@...> wrote: Well I had it again

> last night well not last night but early this

> morning. Then all wet from when it broke. I am going to see my Rheumy

> tomorrow and sure hope she can figure this out.

>

> ette

>

> nycboo@... wrote:

> >

> > With my first flare I had chills and night sweats every

> night...sounds

> > like

> > its from Stills to me.

> >

> >

> >

> >

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Hi, OK I have really had it! I went to my Rheumy today and first my

pressure was very high. It was in the thirties the first time, then a

month ago it was in the forties and this month it was in the fifties. I

ask about that. She just took my pressure again after about a half-hour

or so and it was in the thirties. I tool her I was concerned because

every month it's been going up. She just said she would have to keep

checking the pressure. When it stays up then she will do something. I

told her well how high are you going to wait for it to go? No answer.

It's gone up every month. She didn't do anything! Then I showed her the

round red circles on the top of my wrists and the rash (which doesn't

itch or hurt) and she just said, I don't know. And left it at that.

Meanwhile my eyes were and have been watering all morning and she just

asked if I was taking any allergy medicine which was NO and she didn't

give me any either. Then the third problem but maybe the most

significant was the hip hurting all morning. It hurt to the point to

where it felt like a trick hip. I almost fell when I went to put

pressure on it. I also told her about the lower spine aching so badly,

whenever I go to sit down. It's OK when I am up and walking around but

when I go to sit it hurts so bad. All she said about these is, one, oh

you are having lower pain ok and two try taking an anvil. Now my OBGYN

has me on birth control pills to control another problem of mine and he

told me not to take Advill or any aspirin. When I told her this she just

said oh well I would try taking on or two a day. Anyway did that and the

pain isn't any better. It didn't even take the edge off and I am afraid

to take too many because of what the other doctor said. I go see him

tomorrow! I will let him know about this and maybe he has a Rheumy he

can recommend. Anyway, I am so made! I guess I just have to suffer with

this pain and fatigue that gets me down so bad, and having children I

just can't take the time to nap, well at least until I can find a new

doctor.

Thank you for letting me air my problems. I am so frustrated and in pain

that I just want to cryyyyyyyy. Think I will go have a good cry!

ette

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" Thank you for letting me air my problems. I am so frustrated and in pain

that I just want to cryyyyyyyy. Think I will go have a good cry! ette "

ette,

First, have yourself that healthy cry, and then a quick nap if you can.

Second, call the pharmacy and tell them what you are taking and ask what things

like advil, tylenol, etc you can take safely with your drugs or what he would

reccomend you ask your doctor for. (He will not be comfortable telling you

unless he knows you want to ask your doctor for medicine and want his expertise

on drug combining since you have two prescribing doctors.)

Third, you must find a compassionate doctor. The one you have is not listening

and she thinks she can get away with it. Ask your GYN about your BP, and the

rash and pain in your hips. You can always blame the hip pain on your female

disorders and ask him if he thinks it is related and if not, who should you see.

He may be able to prescribe something for the BP. He is after all, a woman's

health care practicioner and is able to help on most overall health issues

although his main focus is female disorders of reproductive organs.

If you have a doctor you like, ask them who they like in the rheumatology field.

I have found that when a doctor I like refers me to a collegue of his in a

different field, I usually like them too. If I dislike the referring MD, I

frequently fail to thrive under the care of the new referred doctor also.

Personality traits attract certain types of friends so obviously if you like

one, you will usually like his friends.

Hope you find relief tomorrow from your doctor. Throw yourself on his mercy. BEG

for help. Tell him he is your last resort and that you have run out of " Knights

in shining armor. " Be sincere. I did this once with a semi unreasonalble doctor

with good results. I am not trying to be funny here, but he had given me the

treatment you described above and I was desperate like you are now. I looked up

at him, extremely frustrated and said, " Look doc, I don't play the damsel in

distress very well and you are not helping me do it very gracefully. I may speak

calmly, and look all together but if you don't come to my rescue right

now,today, this minute... I don't think I will be able to keep all my puzzle

pieces in the same box by tonight! Read my lips: I NEED HELP and the fact that I

am even asking for it should tell you how desperate I am!!! " He got with the

program, started listening to me with concern and I got the treatment I needed.

(My good doctors know that if I resort to my sense of humor to cope (as in every

single thing is a joke, laugh, silly or funny and they can't get a straight

answer out of me, I am in trouble.)

I am not a cryer, am pretty independent usually and hardly ever lean on someone.

I don't usually complain or ask for help unless I am desperate. I am trying to

change these bad habits now that I have people to lean on. Sometimes, you have

to smack them across the head with something they don't expect from you to get

their attention and from then on you get help, and respect.

We are all in your corner. Don't forget to find a smile or two today... even if

it is your total warfare smile. =)

Caroline

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