New here

[Guest guest]

Welcome . This is a great list. Everyone here is every friendly and

knowledgeable. Tery

[Guest guest]

Hi

welcome to the group, I to am fairly new to this group, I've found them to

be the most helpful and compassionate group around

Verna

> Hi Group

>

> My name is ....I'm a 55 yo male living alone with RA and also a form

of MD...Charcot-Marie-Tooth Disease....I look very much forward to reading

and learning lots about RA on this list.....

>

> Thank You

>

>

>

>

[Guest guest]

Welcome to our group . You'll definitely learn a lot about RA on this

list. It is full of knowledgeable people. I had not heard of the type of

MS that you have, so I had to look it up.

http://www.charcot-marie-tooth.org/

explained it to me. It must be very difficult to have both RA and MS.

We have a web site that Judy has made for us with many very good sites about

RA and related diseases. The link is at the bottom of every email for easy

reference. http://www.rasupport.webprovider.com/

It has a lot of information about the meds and tests for RA. If you have

any questions, feel free to ask. I enjoy internet research and will try to

find answers to anyone's questions.

I am 45 and was diagnosed with RA when I was in my early 20's. I'm on

Enbrel & Voltaren, which is helping me a lot.

a

----- Original Message -----

From: <dmillerman@...>

< egroups>

Sent: Tuesday, May 30, 2000 9:23 AM

Subject: [ ] New Here

> Hi Group

>

> My name is ....I'm a 55 yo male living alone with RA and also a form

of MD...Charcot-Marie-Tooth Disease....I look very much forward to reading

and learning lots about RA on this list.....

>

> Thank You

>

>

>

>

[Guest guest]

Welcome, !

This is a wonderful group. I hope you enjoy it as much as I do. If you want

to learn about RA, this is the place. We are also very supportive of each

other and have a lot of fun.

How long have you known you that you have Charcot-Marie-Tooth? RA?

I'm looking forward to getting to know you better.

(who is 41, living with her three children, and is in No Definite

Diagnosis Hell)

----- Original Message -----

From: " a " <aA@...>

< egroups>

Sent: Tuesday, May 30, 2000 7:05 PM

Subject: Re: [ ] New Here

> Welcome to our group . You'll definitely learn a lot about RA on

this

> list. It is full of knowledgeable people. I had not heard of the type

of

> MS that you have, so I had to look it up.

> http://www.charcot-marie-tooth.org/

> explained it to me. It must be very difficult to have both RA and MS.

> We have a web site that Judy has made for us with many very good sites

about

> RA and related diseases. The link is at the bottom of every email for

easy

> reference. http://www.rasupport.webprovider.com/

> It has a lot of information about the meds and tests for RA. If you have

> any questions, feel free to ask. I enjoy internet research and will try

to

> find answers to anyone's questions.

>

> I am 45 and was diagnosed with RA when I was in my early 20's. I'm on

> Enbrel & Voltaren, which is helping me a lot.

>

> a

>

> ----- Original Message -----

> From: <dmillerman@...>

> < egroups>

> Sent: Tuesday, May 30, 2000 9:23 AM

> Subject: [ ] New Here

>

>

> > Hi Group

> >

> > My name is ....I'm a 55 yo male living alone with RA and also a

form

> of MD...Charcot-Marie-Tooth Disease....I look very much forward to reading

> and learning lots about RA on this list.....

> >

> > Thank You

> >

[Guest guest]

Welcome Suzanne!!

We're glad you've jumped on board. Where are you located? I'm from

Iowa. Married and have four children. I was diagnosed in 1996 with CMT Type 1.

I have some of the same numbness problems that you talk about. Mine effects

me more if I'm sitting to long or my arms are resting in a certain position to

long.

This group is wonderful for info, encouragement and humor!

Best of Luck

Jane

----- Original Message -----

From: suzmmmyers@...

Sent: Tuesday, January 16, 2001 2:36 PM

egroups

Subject: [] new here

Hello everyone. I stumbled across this group and can not tell you how

excited I was...people with CMT so seldom run into anyone with CMT.

I just got this computer for Christmas and am just learning all the

ins/outs of surfing and everything and getting the glitches out of

this computer. My name is Suzanne Myers and I was diagnosed in 1997

with probable CMT, after over 20 years of being misdiagnosed...my

information has come from CMT international out of Canada and I do

not know what I would have done without it...as the doctors here say

CMT can never cause problems, no matter how severe the nerve damage

and I was not walking at the time. My feet and legs were numb with

hands going numb from " trying " to use crutches to walk..After 4 years

I still do not have a doctor..and am having much trouble finding one

who will listen to me, or read any CMT information. Well I just

wanted to say hello and that I am very glad to have found this site

with other people with CMT. Suzanne

[Guest guest]

-----Original Message-----

From: suzmmmyers@... <suzmmmyers@...>

egroups <egroups>

Date: Tuesday, January 16, 2001 2:34 PM

Subject: [] new here

Hi Suzanne, welcome! The Dr's you've seen actually say CMT can never cause

problems? Boy do they need a refresher med course! And some common sense

to go along with it! What do they think CMT is? Its a Peripheral

Neuropathy, we just aquired in our genes! Find another neurologist if you

can, have you tried the MDA? Muscular Dystrophy Assoc. Ask your Dr's if CMT

can NEVER cause any problems, why then does the MDA cover it in their

research and treatment programs? Do they think that Muscular Dystrophy

never causes problems? Geesh! You poor thing, how frustrating you must

feel. Are you married? How old are you? Any children, if so do any of them

have CMT symptoms? How about other family members, do they have CMT or show

any signs of having it? ~>Becky M.

>Hello everyone. I stumbled across this group and can not tell you how

>excited I was...people with CMT so seldom run into anyone with CMT.

>I just got this computer for Christmas and am just learning all the

>ins/outs of surfing and everything and getting the glitches out of

>this computer. My name is Suzanne Myers and I was diagnosed in 1997

>with probable CMT, after over 20 years of being misdiagnosed...my

>information has come from CMT international out of Canada and I do

>not know what I would have done without it...as the doctors here say

>CMT can never cause problems, no matter how severe the nerve damage

>and I was not walking at the time. My feet and legs were numb with

>hands going numb from " trying " to use crutches to walk..After 4 years

>I still do not have a doctor..and am having much trouble finding one

>who will listen to me, or read any CMT information. Well I just

>wanted to say hello and that I am very glad to have found this site

>with other people with CMT. Suzanne

>

>

>

[Guest guest]

HI IM NEW TO THE COMPUTER TO . I HAVE C.M.T. SO DOES MY DAUGHTER IM HAVING

A HARD TIME FINDING A DOCTOR TO I WOULD LIKE TO CHAT WITH YOU SOMETIME

EMAIL ME Ponnee@...

[Guest guest]

-----Original Message-----

From: ponnee@... <ponnee@...>

egroups <egroups>

Date: Thursday, January 18, 2001 7:29 PM

Subject: Re: [] new here

Hi and welcome! Tell us about yourself, about your CMT, what symptoms do

you have? Any other family memebers with CMT? Do you have any children and

if so do any of them have CMT? ~>Becky M.

>HI IM NEW TO THE COMPUTER TO . I HAVE C.M.T. SO DOES MY DAUGHTER IM

HAVING

>A HARD TIME FINDING A DOCTOR TO I WOULD LIKE TO CHAT WITH YOU SOMETIME

>EMAIL ME Ponnee@...

>

>

[Guest guest]

Hi Cheryl,

Many of us have gone through the same as you. It's heartbreaking to

think of the mothers who do not have a computer. My search word was

Misshaped Cranium. This led me to a Neuro in LA, and then this group.

Mt daughter is 19 months, and she was fitted with her DOC Band at 15

months. As of tonight we have seen the most amazing improvement. She

does not have Torticollis but you should jump on their group as well.

Torticolliskids-subscribe

Please take the time to sign my Petition

Positional Plagiocephaly Petition

http://www.petitiononline.com/0799/petition.html

Check out the files section on Insurance questions!!

Sierra 07/99

11/97

Redford, MI

> Hello everyone. My name is Cheryl and my four month old baby has

tort

> and plagio. Like many of you, I have been very frustrated tryinbg

to

> get help for my baby. First, her doctors never diagnosed her tort.

> Kate was born with congenital hip dysplasia which is associated

with

> torticollis. Neither her pediatrician or her ortho picked up on her

> tort. I noticed at 3 months that her forehead seemed to be bulging

> and one eye seemed slightly bigger than the other and one cheek

> looked fuller than the other. Her left ear was larger and misshapen

> from early on. I thought this was just the way she was going to

look.

> Finally, when she got old enough to hold her head up, I noticed the

> neck tilt. I got on the computer and typed in " wry neck " and

> diagnosed her myself! I can't tell you how little confidence I have

> in her doctors. All the signs were there since birth, and they just

> never really examined her close enough. When I took her to the

ortho

> doc who treats her for the hip dysplasia, he confirmed the tort and

> told me some exercises to do. He never once mentioned her plagio or

> the importance of repositioning her. I made her an appt. with

cranial

> tech and a craniofacial surgeon for Wednesday. Can anyone tell me

> what to expect? Will the DOC band resolve her facial asymmetry

> completely? Thank God that at 3 months when I noticed the left side

> of her head being flat I started aggresive reposiotning on my own.

> That helped some. Is there some debate as to whether this therapy

> actually works? Has everyone been pleased with the results? Should

I

> fire her doctors? Or am I expecting too much? I tell you, I think

> this is a big problem (plagio and tort not being diagnoised &

> treated). I have had to totally take matters in my own hands up

until

> this point...I just feel like her docs have been NO help at all. By

> the way, I have BCBS of Alabama...does anyone know if they pay for

> the band? Any advice is greatly appreciated...sorry for the long

> post. I look forward to getting to know all of you. Best of luck

with

> your own precious babies.

[Guest guest]

Cheryl-

I'm glad you found us. The advice and support I have received her has been

invaluable!

It's good that you have recognized the tort and plagio early. It is my

understanding that the DOCband (as well as other bands and helmets) can

correct facial assymetry. I don't mean to say that it will correct 100% of

all facial assymetry all of the time, but I know that many people here have

had good luck getting at least some of the asymmetry corrected. You are

getting an early start with seeking treatment compared to some of us who

started at 9 months, 12 months and even older!! You might consider joining

torticolliskids (another egroup) and see what they have to say about tort -

that definately needs to be resolved! Aggressive repositioning has been

effective for some people here and some have not had any luck with it. It

certainly is worth a try! I hope you will keep us posted on how your

specialist appointment goes and let us know if you do decide to get the band!

We have a BUNCH of DOCband parents in this group!!

Marci (Mom to )

Oklahoma

[Guest guest]

Dear - welcome to the group. You will find a wealth of information

and friendship here. You are lucky to be getting treatment at such a young

age.

I am sorry that I cannot answer any of your questions about the pillow or

about Aetna.

Hope that you are able to post pictures of your twins soon.

Are you getting the Doc, Starband or locally made helmet?

Glad to have you here - if there is anything I can, don't hesitate to ask.

Amy(Max's mom- STARband 2/19)

[Guest guest]

Hi Amy!

Thanks for the best wishes. We are getting a locally made helmet. I

havent seen one yet, but according to the orthotist I spoke to today

it is very similar to the Starband. How is Max doing in his - I

assume that the 2/19 means he has been in it a few weeks now?

Ill post some pics soon!

Kimberley

> Dear - welcome to the group. You will find a wealth of

information

> and friendship here. You are lucky to be getting treatment at such

a young

> age.

> I am sorry that I cannot answer any of your questions about the

pillow or

> about Aetna.

>

> Hope that you are able to post pictures of your twins soon.

> Are you getting the Doc, Starband or locally made helmet?

>

> Glad to have you here - if there is anything I can, don't hesitate

to ask.

>

> Amy(Max's mom- STARband 2/19)

[Guest guest]

>Welcome Kimberley!

I am glad to hear that you are getting treatment soon. I don't know

much about the pillow, so I can't help much with that. We got

approved with Aetna for my son's DOC Band and got 100%. If you would

like to e-mail me directly I can try to get you some information you

might need. Good Luck!

& 2/23/00

Hi!

>

> Im so glad I found you all. Ive spent a few hours reading the posts

> here and looking at all the files, and Im just glad not to feel

alone

> in all this. My daughter Hope (4mos) was diagnosed just last week

> with positional plagiocephaly and we go for a casting for a helmet

on

> April 2nd. Her twin brother, Evan, has a mild flattening on hte

back

> of his head too, and we are hoping to be able to adjust that with

> repositioning. If not, he may also be going for a helmet.

>

> One question that immediately occurs to me is whether anyone has

had

> any success with the Knickknackpaddywhack cushions -

> (http://www.knickknackpw.com). I thought you werent supposed to use

> pillows with infants, so Im wondering whether to go this route or

> not.

>

>

> I would also love to hear from anyone who has had any luck with

Aetna

> insurance.

>

> Thanks for being there!

>

> Kimberley

[Guest guest]

One question that immediately occurs to me is whether anyone has had any success with the Knickknackpaddywhack cushions - (http://www.knickknackpw.com). I thought you werent supposed to use pillows with infants, so Im wondering whether to go this route or not.

;

I don't know of anyone who has used this (or other) pillows, but there has been a lot of interest. Also check www.snuglbuds.com and check out the "travelbud". You can use it as a positioner. I think these pillows would be fine during the day, under supervision, but I personally would not use them in the crib overnight. JMO

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: kimberley.farrar@...

Plagiocephaly

Sent: Monday, March 19, 2001 4:56 PM

Subject: New here

Hi!Im so glad I found you all. Ive spent a few hours reading the posts here and looking at all the files, and Im just glad not to feel alone in all this. My daughter Hope (4mos) was diagnosed just last week with positional plagiocephaly and we go for a casting for a helmet on April 2nd. Her twin brother, Evan, has a mild flattening on hte back of his head too, and we are hoping to be able to adjust that with repositioning. If not, he may also be going for a helmet. One question that immediately occurs to me is whether anyone has had any success with the Knickknackpaddywhack cushions - (http://www.knickknackpw.com). I thought you werent supposed to use pillows with infants, so Im wondering whether to go this route or not. I would also love to hear from anyone who has had any luck with Aetna insurance.Thanks for being there!Kimberley

[Guest guest]

,

Welcome - I'm glad you found us! We have lots of parents with twins in this

group so you are in good company! :-) As far as the pillow question you had -

I would probably think twice about letting my baby use one through the night.

That product as well as something called the butterfly pillow (made by

Snuglebuds) would probably be better to be used when you are monitoring your

child (like in the stroller or swing or maybe when they are laying on the

floor with an overhead toy). My baby is 14 months old and to be able to get

her to stay still and use a pillow through the night would require duct

tape!! LOL

From what I understand the butterfly pillow is a good one for repositioning

and the doughnut pillow is to aid back sleeping. I've only seen the products

online so someone correct me if I'm wrong.

You have come to the right place. This group is an AWESOME source of support

and answers. I'm glad you joined us!!

Marci (Mom to )

Oklahoma

[Guest guest]

" Anyways I want to try a cleanse where do I start and what do I do and is it

painful or does it make you really sick? Help me please! Or is this

gallbladder problems? "

Hi:

No one has answered this one and there are probably many people more

qualified than I am to answer, but will respond to the request for help.

Others are more than welcome to make comments on my views.

If you are interested in doing a first time flush (as opposed to longer term

treatment), my recommendation would be the flush that can be found at:

http://www.curezone.com/cleanse/liver/huldas_recipe.asp

For the purpose of clearing out gall stones it is not necessary to do all of

the other cleansing first, as recommended at that site.

Reasons for that particular formula as a 1st flush:

1. It works! And it works well.

2. In the several years since doing my first flush with that method, I

haven't experienced or read of any problems associated with pain or stuck

stones, which was my greatest fear in doing the first flush. When I did my

first flush, I had not seen any testimonials about the flush, but was going

on the recommendation of the Ask Tom Naturally site that the

liver/gallbladder flush was the most important single cleanse that you could

do to improve your health.

3. The Epsom salt clean out allows you to see the results of your flush. If

you don't do the full intestinal clean out the stones will be intermingled

with fecal material and will be hard to detect, and when you can't see

results it is easy to become discouraged. There are statements made that the

salts also " relax " the gallbladder and ducts, but no supporting evidence has

ever been written on that aspect. Ornithine is also recommended to do the

same thing though I haven't seen supporting evidence for it either, but I

have always used it in my 15 flushes. Bottom line for me for the Epsom salts

is that it allows you to see results. Also, the morning Epsom salts does

more of the same thing, and may in fact prevent the " clumping " together of

large quantities of stones, which could have a blocking effect in the colon.

Dr. Mercola's site at: http://www.mercola.com/2002/feb/13/gall_bladder.htm

also makes suggestions that I haven't yet tried, including using flax oil and

radishes for longer term gallstone removal. In fact there are a few sites

that recommend 1 or 2 radishes a day for gallstone expulsion.

As for becoming ill, many people have reported nausea caused by either the

Epsom salts and the olive oil. My personal view is that olive oil is not as

critical as some believe it to be, and a less than virgin oil doesn't taste

as bad and probably has the same results. I say that, because I passed

gallstones after ingesting a fatty pork roast, followed an hour later with a

large glass orange juice - made from frozen concentrate. I wasn't doing a

flush, just having an evening meal. Both the animal fat and the orange juice

defies every principal I've read on doing the flush, but was a message to me

that perhaps the principals are more flexible than are commonly believed.

Anyway, be sure that your Epsom salt water is cold, and my recommendation is

to use distilled water because tap water contains chlorine which really

reacts unfavorably with the Epsom salts, taste wise.

Good luck in whatever method you choose.

Jay

[Guest guest]

--- Thank you for answering. I read the instructions and I like to

know do you have to do the kidney and parasite thing first am

confused. In gallstones@y..., JayTownsend@a... wrote:

> " Anyways I want to try a cleanse where do I start and what do I do

and is it

> painful or does it make you really sick? Help me please! Or is this

> gallbladder problems? "

>

> Hi:

>

> No one has answered this one and there are probably many people

more

> qualified than I am to answer, but will respond to the request for

help.

> Others are more than welcome to make comments on my views.

>

> If you are interested in doing a first time flush (as opposed to

longer term

> treatment), my recommendation would be the flush that can be

found at:

>

> http://www.curezone.com/cleanse/liver/huldas_recipe.asp

>

> For the purpose of clearing out gall stones it is not necessary to

do all of

> the other cleansing first, as recommended at that site.

>

> Reasons for that particular formula as a 1st flush:

>

> 1. It works! And it works well.

>

> 2. In the several years since doing my first flush with that

method, I

> haven't experienced or read of any problems associated with pain or

stuck

> stones, which was my greatest fear in doing the first flush. When

I did my

> first flush, I had not seen any testimonials about the flush, but

was going

> on the recommendation of the Ask Tom Naturally site that the

> liver/gallbladder flush was the most important single cleanse that

you could

> do to improve your health.

>

> 3. The Epsom salt clean out allows you to see the results of your

flush. If

> you don't do the full intestinal clean out the stones will be

intermingled

> with fecal material and will be hard to detect, and when you can't

see

> results it is easy to become discouraged. There are statements

made that the

> salts also " relax " the gallbladder and ducts, but no supporting

evidence has

> ever been written on that aspect. Ornithine is also recommended to

do the

> same thing though I haven't seen supporting evidence for it either,

but I

> have always used it in my 15 flushes. Bottom line for me for the

Epsom salts

> is that it allows you to see results. Also, the morning Epsom

salts does

> more of the same thing, and may in fact prevent the " clumping "

together of

> large quantities of stones, which could have a blocking effect in

the colon.

>

> Dr. Mercola's site at:

http://www.mercola.com/2002/feb/13/gall_bladder.htm

> also makes suggestions that I haven't yet tried, including using

flax oil and

> radishes for longer term gallstone removal. In fact there are a

few sites

> that recommend 1 or 2 radishes a day for gallstone expulsion.

>

> As for becoming ill, many people have reported nausea caused by

either the

> Epsom salts and the olive oil. My personal view is that olive oil

is not as

> critical as some believe it to be, and a less than virgin oil

doesn't taste

> as bad and probably has the same results. I say that, because I

passed

> gallstones after ingesting a fatty pork roast, followed an hour

later with a

> large glass orange juice - made from frozen concentrate. I wasn't

doing a

> flush, just having an evening meal. Both the animal fat and the

orange juice

> defies every principal I've read on doing the flush, but was a

message to me

> that perhaps the principals are more flexible than are commonly

believed.

> Anyway, be sure that your Epsom salt water is cold, and my

recommendation is

> to use distilled water because tap water contains chlorine which

really

> reacts unfavorably with the Epsom salts, taste wise.

>

> Good luck in whatever method you choose.

>

> Jay

>

>

>

>

[Guest guest]

Dear bait bait,

Jay had some great advice for you on what flush to try. It's at

www.curezone.com Most of the flushers in here seem to use Dr. s

method of cleansing the liver and gb because it is very easy to do.

No pain at all if you follow the method correctly. The results will

blow you away. :-)Read the testimonies on that site as well. It will

make you feel more comfortable when you read what others are

experiencing.

If you have no pain in the gb then why is the doctor already talking

about removing it before even seeing if you have stones in the gb

with ultrasound? Bilburin levels should be able to be corrected with

supplements instead of gb removal. Ask your doctor about that.

Bilburin is an ingredience of your bile and this would suggest a

problem in your liver and/or gb. Stones are formed from bad bile

contents. Too much of an ingredient or too little. Bile has water,

cholesterol, bile salts, and bilburin. The bilburin is what gives

your stool it's color. Bad bile could cause problems with stool and

bowel movements but bowel movement problems are caused by other

problems as well. Bad bile stagnating in your gb will produce stones.

And sometimes stones can form inside a sluggish liver too.

Good luck, and try a flush or two. Can't hurt and can only improve

your health situation. Don't let your doctor remove your gallbladder

without ultrasound evidence of stones or a diseased gb. Just the

elevated bilburin level shouldn't be a reason for gb removal. I'd try

changing the levels with supplements and diet before surgery. Also if

ultrasound does show stones in your gb you can always try flushing

first to get them out before loosing your organ.

Hope this helps in some way.

Barry.

> I have not felt good for a couple of weeks thought it was just the

> flu so went to the doc and she did a CBC and found my bilburin

level

> was elevated and said it coulf be gastritis or gallstones. My

> symtoms have been bloated burning stomach nausea sweaty and chills

> and fatigue no pain.She wants me to come back in a week to do

another

> CBC test and if still elevated she is talking about doing a ultra

> sound and removing my gallbladder. I dont want surgery!

> I have had problems with my bowels for awhile now and was just

> diagnosed with diverticulitis and my problem was I never could get

my

> bowel to come out. Would gallbladder cause this?

> Anyways I want to try a cleanse where do I start and what do I do

and

> is it painful or does it make you really sick? Help me please! Or

is

> this gallbladder problems?

[Guest guest]

Hi there Spr52,

Welcome and I sure do hope that you don't get any misleading info. I think you'll find this to be a pretty friendly board loaded with folks that want nothing more then to help anyone who needs it. You are so right to realize that this info is simply a recount of our experiences, which is all we have. Good luck in your persuit of good health and please let us know how you make out. Joyce.

>From: "spr52"

>low dose naltrexone >Subject: [low dose naltrexone] New here >Date: Tue, 03 Jun 2003 00:36:33 -0000 > >Hello everyone, > >I am new here and was diagnosed with multiple choices of >diseases. As per my new doctor, I probably have fibromyalgia, >definitely proriasis, arthritis or psoriatic arthritis, possible >lupus....first blood test positive-second test negative. I have a >white coated tongue and was told that was thrush. I have some >small lesions on my tongue and a small white bump in the right >front side of my inner cheek. > >I am now on LDN, tonight being the 5th night. I am wondering if >there is anyone else out there that has the same or very similar >health concerns I described above. That has been on LDN >longer than I and what results you have had. I also have a hiatal >hernia and severe pain in the left chest ribs 5 through 8 or very >close. Really close to the center of chest and right above heart >region of chest cavity. My surgery for that was 4 + years ago to >remove a non-cancerous duplication cyst. I feel like the medicine >is working. With so many issues I would like to know how rapidly >anyone else has progressed with LDN. > >Thanks in advance for any answers. I am a very candid person >too. Anyone who may wish to play a practical joke or reply with >misleading information. Please move on and play your games >with people who are in good health. This is far too important to >me to have someone play deceptive games. This has already >happened to me. I am not gullible and I will get several opinions >from professional people. I am smart enough to to know that >replies are simply recounts of what one prson experienced and >not to be implemented without the advice of a person more >knowledgible than I. Common sense is one of my strongest >traits. > >Thank you, > >SPR52 > MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*.

[Guest guest]

Corinna: welcome to the group. You will probably have more energy than

ever if you do CRON correctly. Since you've experienced eating disorders in

the past, just be moderate about CRON. We have several sad stories to tell

about a few CRONIES who went to extremes and wound up with health problems.

Read all our files. If you just start out with " CR MADE Easy " and go on

from there, you'll do OK.

on 12/6/2003 1:18 PM, Corrinna at corrinna@... wrote:

> This is probably stupid but do you find you have energy for the day

> with this lifestyle, or do you tire easily? Its funny cause when

> I " diet " I'm tired...but right now I'm not dieting or doing

> anything else and I have very little energy to get thru my days.

[Guest guest]

>>>I am sure that most of the stones [are] initally formed and stored in the

liver.<<<

Spot on! There are pictures of livers in the images either in the archives here

or on curezone that show livers with stones in the ducts.

Blessings

Mama.

[Guest guest]

Aspirin may help with your symptoms, but there are medicines called

Disease Modifying Anti-Rheumatic Drugs (DMARDs) that slow or halt the

progression of RA, and these are usually prescribed to people with

confirmed RA. It doesn't sound like your doctor is up to date on RA

treatment. I would definitely seek out a rheumatologist if I were you.

Time is of the essence in treating RA.

Sierra

>

> My name is Tina. I'm a 38 yr. old mom of 3. Just diagnosed today

> with RA. I'm scared sh*tless. Crying all day. Where do I begin? I

> have a million questions. My PCP said she recommends just keeping

me

> on 3 aspirin 3 X a day that she suggested today as the Aleve hasn't

> been doing the trick. But shouldn't I get my ass to an RA Doc

ASAP?!

> I've got damn good insurance and intend to make good use of it! In

> the past 2 months out of no where I've started having lung problems

> too. I got an upper resp. infection in mid May, mild but the cough

> has been lingering for 2 months and refuses to go away!!! Now I've

> got a bad rash on my hands and feet. I stumped the Doc's for 3 days

> on that....untill the blood tests came back. Now we know why my

> hands have been aching so badly for months. And my feet before

that,

> although I do have fallen arches to help with the foot pain. Unsure

> if the RA is why my hips hurt too, because chairs we sit in at work

> suck REAL BAD. We're fighting for new ones. So should I call my PCP

> in the AM and ask for the name of a go RA Dr.?? I'm thinking YES!!!

> This is my LIFE here! My husband and I want to adopt a baby girl

> from China and I want to be able to raise her and be her Mom! Not a

> suffering crying ball of pain! Also if there is anyone out there in

> New Hampshire that knows of a support group please e-mail me the

> info. Thanks! ~Tina~

>

[Guest guest]

Welcome to the group. I sure agree

with your desire to get to a rheumatologist and start aggressive

treatment. Here’s a link to an English booklet that I think has

good and easily readable information about RA. http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

If your PCP will not refer you to a rheumatologist I think you should

try to make an appointment on your own, and perhaps think of changing PCPs as

well.

RA can be hard to diagnose and blood work is only one of seven criteria

for diagnosing RA and any four criteria qualify for a positive diagnosis.

However, many other things have some symptoms in common with RA (including

blood work) so it does take a rheumatologist and often some time to get a firm

diagnosis.

I don’t know about support groups but the Arthritis Foundation

has chapters throughout the country and there may be one near you.

http://www.arthritis.org/default.asp

RA is frightening especially to begin with

but most people are fairly well controlled within a year or two but it does

take time to find out what medications and dosages are right for you. Let

us know how you make out. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of travswife2003

Sent: Wednesday, June 28, 2006

9:41 PM

Rheumatoid Arthritis

Subject:

New here

My name is Tina. I'm a 38 yr. old mom of 3. Just

diagnosed today

with RA. I'm scared sh*tless. Crying all day. Where do I begin? I

have a million questions. My PCP said she recommends just keeping me

on 3 aspirin 3 X a day that she suggested today as the Aleve hasn't

been doing the trick. But shouldn't I get my ass to an RA Doc ASAP?!

I've got damn good insurance and intend to make good use of it! In

the past 2 months out of no where I've started having lung problems

too. I got an upper resp. infection in mid May, mild but the cough

has been lingering for 2 months and refuses to go away!!! Now I've

got a bad rash on my hands and feet. I stumped the Doc's for 3 days

on that....untill the blood tests came back. Now we know why my

hands have been aching so badly for months. And my feet before that,

although I do have fallen arches to help with the foot pain. Unsure

if the RA is why my hips hurt too, because chairs we sit in at work

suck REAL BAD. We're fighting for new ones. So should I call my PCP

in the AM and ask for the name of a go RA Dr.?? I'm thinking YES!!!

This is my LIFE here! My husband and I want to adopt a baby girl

from China

and I want to be able to raise her and be her Mom! Not a

suffering crying ball of pain! Also if there is anyone out there in

New Hampshire

that knows of a support group please e-mail me the

info. Thanks! ~Tina~

[Guest guest]

Welcome back. RA can be a hard

disease to diagnose and I like what your Nurse Practitioner did for you in

ordering a Medrol pack. That’s a strong anti-inflammatory and I

think it is more useful in identifying inflammation than any blood test.

You might also ask about a blood test for anti-CCP that is like the rheumatoid

factor test but less likely to give a false positive. The American College of Rheumatology has seven

criteria for diagnosing RA and because RA can be so variable they only require

any four of them to be positive for a diagnosis.

Morning stiffness,

lasting for at least an hour, present daily for at least 6 weeks

Arthritis of 3 or

more joints, lasting for at least 6 weeks

Arthritis of the

hand joints, lasting for at least 6 weeks

Symmetric arthritis,

lasting for at least 6 weeks

Rheumatoid nodules

Positive rheumatoid

factor (blood test)

Joint changes on

x-ray

There are also over 100 different kinds of inflammatory

arthritis and although RA is the most common there are many others that have

some symptoms in common with RA. It often takes a good rheumatologist a

year or more to come to a definite diagnosis so don’t give up on trying

to get a diagnosis. However, I am disappointed in your doctor in not

giving your symptoms more consideration and treatment. If you can get a

second opinion I would suggest it.

http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

The link above is to a booklet that I like to give a lot of information

about RA. Keep us posted on how you are doing and God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of

Sent: Sunday, July 16, 2006 8:05

AM

Rheumatoid Arthritis

Subject:

new here

Well, not really new. I joined this group probably a

year ago when I suspected these flare

ups I was having might be RA. After 4 years of this (yes, I'm slow!) I finally

went to a

rheumy. He was recommended by a coworker and I was warned that he was a good

doctor,

but had a crummy bedside manner. I went anyway. My RA, ESR, and CRP were only

slightly

elevated, and the joints I complained about he said were not joints typically

affected by RA

(hips, shoulders, elbows occasionally, & knees). He fixated on my right

hand thumb joint,

which was very swollen and tender (Couldn't hold my hairbrush or open a bottle

of water,

or let my 3 year old students high five me). He said that was osteo and all he

could do was

give me a cortesone shot which did help some. Anyway, he said he couldnt do

anything

until I was in pain, so come back when I was in pain. He also said he thought

it might be

Palindromic Rhuematism, but just keep taking the celebrex I was on.

I was discouraged at a definitive diagnosis (not that I WANT RA, I just want

relief), so I

didn't look for answers anymore until this last flare up a few weeks ago. I had

pnuemonia

and on top of that a flare up while I was 1000 miles away on vacation. I was

miserable. I

finally went back the other day and saw the nurse practitioner instead of the

doctor. I LOVE

HER! She listened to my list of complaints and was very concerned for me. She

prescribed

medrol for one week to get the inflammation under control (and 2 days before

rheumy

appt. I had cortesone shots in my feet so I could walk- been hobbling for over

a year). She

also prescribed valtorin (?) instead of the celebrex which wasn't covered by my

insurance,

and is getting me started on plaquenil after my eye exam. She also prescribed

MRI's of my

wrists, hands, and hips. (The wrist pain is new since last year- so I'm worried

about

progressive damage).

I'm 45 year old female who has fought & won the battle against Hepatitis C

(6 years clear

now), and I feel this diagnosis may be connected to the interferon I took for

the hep c. I

value a good support group; it helped me tremendously though the hep c issues,

and now

I'm vice pres of a hep c 501c3 non profit helping others without insurance get

treatment &

medical care. I look forward to learning about this disease and the

medications, side

effects, so I can be a good advocate for my own health.

I would appreciate any feedback from you to help me learn & deal with this.

Take care,

PS. Sorry for writing a novel!

[Guest guest]

Related RA with Hepatitis C http://www.medscape.com/medline/abstract/12610800?queryText=cross%20sectional%20studies

On 7/16/06, Harold Van Tuyl <hvantuyl@...> wrote:

Welcome back. RA can be a hard disease to diagnose and I like what your Nurse Practitioner did for you in ordering a Medrol pack. That's a strong anti-inflammatory and I think it is more useful in identifying inflammation than any blood test. You might also ask about a blood test for anti-CCP that is like the rheumatoid factor test but less likely to give a false positive. The American College of Rheumatology has seven criteria for diagnosing RA and because RA can be so variable they only require any four of them to be positive for a diagnosis.

Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks Arthritis of 3 or more joints, lasting for at least 6 weeks Arthritis of the hand joints, lasting for at least 6 weeks Symmetric arthritis, lasting for at least 6 weeks Rheumatoid nodules Positive rheumatoid factor (blood test) Joint changes on x-ray

There are also over 100 different kinds of inflammatory arthritis and although RA is the most common there are many others that have some symptoms in common with RA. It often takes a good rheumatologist a year or more to come to a definite diagnosis so don't give up on trying to get a diagnosis. However, I am disappointed in your doctor in not giving your symptoms more consideration and treatment. If you can get a second opinion I would suggest it.

http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

The link above is to a booklet that I like to give a lot of information about RA. Keep us posted on how you are doing and God bless.

From:

Rheumatoid Arthritis [mailto:

Rheumatoid Arthritis ] On Behalf Of Sent: Sunday, July 16, 2006 8:05 AM

Rheumatoid Arthritis

Subject: new here

Well, not really new. I joined this group probably a year ago when I suspected these flare ups I was having might be RA. After 4 years of this (yes, I'm slow!) I finally went to a rheumy. He was recommended by a coworker and I was warned that he was a good doctor, but had a crummy bedside manner. I went anyway. My RA, ESR, and CRP were only slightly elevated, and the joints I complained about he said were not joints typically affected by RA (hips, shoulders, elbows occasionally, & knees). He fixated on my right hand thumb joint, which was very swollen and tender (Couldn't hold my hairbrush or open a bottle of water, or let my 3 year old students high five me). He said that was osteo and all he could do was give me a cortesone shot which did help some. Anyway, he said he couldnt do anything until I was in pain, so come back when I was in pain. He also said he thought it might be Palindromic Rhuematism, but just keep taking the celebrex I was on.

I was discouraged at a definitive diagnosis (not that I WANT RA, I just want relief), so I didn't look for answers anymore until this last flare up a few weeks ago. I had pnuemonia and on top of that a flare up while I was 1000 miles away on vacation. I was miserable. I finally went back the other day and saw the nurse practitioner instead of the doctor. I LOVE HER! She listened to my list of complaints and was very concerned for me. She prescribed medrol for one week to get the inflammation under control (and 2 days before rheumy appt. I had cortesone shots in my feet so I could walk- been hobbling for over a year). She also prescribed valtorin (?) instead of the celebrex which wasn't covered by my insurance, and is getting me started on plaquenil after my eye exam. She also prescribed MRI's of my wrists, hands, and hips. (The wrist pain is new since last year- so I'm worried about progressive damage). I'm 45 year old female who has fought & won the battle against Hepatitis C (6 years clear now), and I feel this diagnosis may be connected to the interferon I took for the hep c. I value a good support group; it helped me tremendously though the hep c issues, and now I'm vice pres of a hep c 501c3 non profit helping others without insurance get treatment & medical care. I look forward to learning about this disease and the medications, side effects, so I can be a good advocate for my own health.I would appreciate any feedback from you to help me learn & deal with this.Take care,PS. Sorry for writing a novel!