Thanks for the warm welcome!

April 19, 2003

Hi there, I too just posted a message last week, we just got our star

band on Monday. It really does help me too to hear of other parents

going through the same thing and it is educational to hear other's

situations and to ask opinions of others. It really has made this

week easier on me with the support of the kind people out there.

Good luck with your little one's progress!

> Yesterday was the first day I posted a message. Just wanted to

thank

> all of you for such a warm welcome!!! It means so much to me. I

> look forward to hearing more of your stories and sharing Max's

> progress!

>

> Kathleen, Max's mom

> Arizona

March 26, 2006

thmain <thmain@...> wrote:.

My question is......how often do you experience flare-ups?

I do not get many flare-ups unless:

1 - I eat something I am sensitive to [alcohol/any dairy products] then my

hands and feets swell.

2 - My knees: when I am on my feet for too long a period of time.

I know this is probably a very

loaded question but I seem to be flaring frequently.

Second, does anyone out there have a recommendation for a rheumatologist in the

Dallas/

Fort Worth Texas area or close vicinity? I have been to two rheumatologists in

the area but

was wanting to get a second opinion (or third, one doctor stopped taking my

insurance so I

had to change to my current doctor).

Thanks again for all of the support!

March 26, 2006

, my Rheummy is in Tyler, about an hour east of Dallas. He's

Brelsford at the Arthritis & Osteoporosis Clinic, phone- 903.596.8858 if

you're interested. He's a good doctor that I've used for 15 years.

Dennis

Re: [ ] Thanks for the warm welcome!

>

> thmain <thmain@...> wrote:.

>

> My question is......how often do you experience flare-ups?

> I do not get many flare-ups unless:

> 1 - I eat something I am sensitive to [alcohol/any dairy products] then

> my hands and feets swell.

> 2 - My knees: when I am on my feet for too long a period of time.

>

> I know this is probably a very

> loaded question but I seem to be flaring frequently.

>

> Second, does anyone out there have a recommendation for a rheumatologist

> in the Dallas/

> Fort Worth Texas area or close vicinity? I have been to two

> rheumatologists in the area but

> was wanting to get a second opinion (or third, one doctor stopped taking

> my insurance so I

> had to change to my current doctor).

>

> Thanks again for all of the support!

>

March 26, 2006

Hi :

It just seems that when one person in a family has

autoimmune disease (like RA, lupus, MS, etc.) that

there is a history of others with it. Sometimes there

is no one else, and you are the lucky single person in

the family to go through this (lucky you lol), but in

my family there is RA, Raynaud's, and Psoriasis. When

I had my first big flare, which took me to the doctor

for the pain and swelling, I had already begun

thinking that it might be RA because my grandmother

had it. It still was a shock to me that I actually

did have it, though, because it was nothing that I had

given any thought about my acquiring in the years

previous as I had watched my grandmother go through

it.

As far as flares, I have them pretty regularly. For

me, it's sometimes hard to tell whether it's the RA or

FM, but there are other times when I definately know

it's my joints rather than muscles. I alwayss have

pain, more on some days and less on others, but always

pain. I would say a flare is when it is much worse

than usual, and that is about once a week or so,

depending on the weather and other factors like doing

too much. With the RA flares, I have more joint pain

and stiffness, and sometimes swelling, more so in my

elbows, ankles, knees, and hands than anywhere else.

Kathe in CA

--- thmain <thmain@...> wrote:

> Thank you, everyone for the warm welcome to this

> group! Now, I have a ton of questions!!!

>

> First, I was asked by several when I mentioned in my

> initial email about being the only one

> with RA if anyone else way back might have had it.

> I have traced it back as far as I can and it

> does not appear that other family members had/have

> RA. I do not know though if someone

> had it and was not diagnosed. No other family

> members with autoimmune problems/

> disorders that we are aware of.

>

> My question is......how often do you experience

> flare-ups? I know this is probably a very

> loaded question but I seem to be flaring frequently.

>

> Second, does anyone out there have a recommendation

> for a rheumatologist in the Dallas/

> Fort Worth Texas area or close vicinity? I have

> been to two rheumatologists in the area but

> was wanting to get a second opinion (or third, one

> doctor stopped taking my insurance so I

> had to change to my current doctor).

>

> Thanks again for all of the support!

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

March 27, 2006

In a message dated 3/26/2006 12:25:43 PM Central Standard Time,

thmain@... writes:

My question is......how often do you experience flare-ups? I know this is

probably a very

loaded question but I seem to be flaring frequently.

i get flare ups whenever i eat anything tomato based... like pasta

sauce. I noticed it this weekend after not making spaghetti for a while. Damn

it! Also when i do have a good day i tend to overdo myself. Its hard to hold

back when you feel good, knowing you'll pay the next day. Sorry you are

flaring often. hugs

from PA

March 27, 2006

> I do not get many flare-ups unless:

> 1 - I eat something I am sensitive to [alcohol/any dairy products]

then my hands and feets swell.

> 2 - My knees: when I am on my feet for too long a period of time.

Boy, will I love it if I can get to that point!!!

March 27, 2006

, I'm not in your area, but I've read good things about this

rheumatologist:

************************

J. Zashin, MD

Rheumatology

Presbyterian Prof Bldg 3

8230 Walnut Hill Ln #818

Dallas, TX 75231

Ofc: 214-363-2812

Fax: 214-692-8591

Time Spent: Patient Care, Teaching, Research-Clinical

Disciplines: Adult Rheumatology

Locations: Practice-Solo

Member Type: Fellow Member

*************************

Arthritis Today

2001

" More Than Medicine " :

http://www.arthritis.org/resources/arthritistoday/2001_archives/2001_03_04_MoreT\

hanMedicine.asp

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Thanks for the warm welcome!

> Thank you, everyone for the warm welcome to this group! Now, I have a ton

> of questions!!!

>

> First, I was asked by several when I mentioned in my initial email about

> being the only one

> with RA if anyone else way back might have had it. I have traced it back

> as far as I can and it

> does not appear that other family members had/have RA. I do not know

> though if someone

> had it and was not diagnosed. No other family members with autoimmune

> problems/

> disorders that we are aware of.

>

> My question is......how often do you experience flare-ups? I know this is

> probably a very

> loaded question but I seem to be flaring frequently.

>

> Second, does anyone out there have a recommendation for a rheumatologist

> in the Dallas/

> Fort Worth Texas area or close vicinity? I have been to two

> rheumatologists in the area but

> was wanting to get a second opinion (or third, one doctor stopped taking

> my insurance so I

> had to change to my current doctor).

>

> Thanks again for all of the support!

>

September 28, 2006

Hi! I've talked to you in the other forum I belong to! Glad to see you here too! Between these two forums, I've learned so much and have met some really awesome, helpful ladies!fuzzheadferret <tanflgirl@...> wrote: Thanks so much ladies for the warm welcome.It is SO incredible to find a group of women who UNDERSTAND what I am going through!!Thank you thank you thank you!

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

September 29, 2006

Hi Leyna!

Glad you are doing so well. Your story has really given me hope since

you are doing so well after explant! Thank you for all your help...

Shelby

Thanks so much ladies

for the warm welcome.

> It is SO incredible to find a group of women who UNDERSTAND what I am

> going through!!

>

> Thank you thank you thank you!

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

September 29, 2006

Shelby, That's great news to hear! :)fuzzheadferret <tanflgirl@...> wrote: Hi Leyna!Glad you are doing so well. Your story has really given me hope sinceyou are doing so well after explant! Thank you for all your help...Shelby Thanks so much ladiesfor the warm welcome.> It is SO incredible to find a group of women who UNDERSTAND what I am > going through!!> > Thank you thank you thank you!> > > > > > > ---------------------------------> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.>

Stay in the know. Pulse on the new .com. Check it out.

April 29, 2008

Well thanks to all you wonderful folk out there fot the warm welcome

into your ranks.

Yes, it's a group we would prefer not to belong to, but we do!

At the moment I am waiting for the results of my PCR tests that were

done about 2 weeks ago. It's a bit of a nail biting affair as my

January tests revealed a small return of ph+ cells, although the

amount was small(0.0004) This was a bit of a blow as I was

undectectable for about 2 years.

I am sure I'll work this one off easily.

In South Africa the drug of choice is Gleevec(yes spelled differently

to Gleevic)

The other drugs like Sprycel and Dasitinib are still on trial here as

far as I know.

The drug is very expensive here, and those who arn't on Medical Aid,

(Medical insurance) usually receive it free through a local

foundation.

We also have to pay for our PCR, Blood counts and liver function

tests.(every 3 months)

My main side effect is odema of the eyelids, but this usually

subsides as the day progresses.

You guys sre very fortunate in having such wonderful treatment

facilities in the USA and Canada. As far as I know no research is

conducted in South Africa on CML, as we are a small group in total.

Well that enough for now as it's 1h10 in the morning, and I had

better get to bed.

BTW. My Skype address is basil.jacobs, but watch the time zones. I

think we are about 6 hours ahead of you Eastern Time.

Best wishes to all

Basil

April 30, 2008

Welcome Basil,

I am someone who has had CML since 09/06. I have been in molecular

remission since about September, '07. I tend not to think about it as

much as possible! On Gleevec 600 mg since April, 2007.

I love South Africa--my obsession musically was a South African

musician named ny Clegg. Have you heard of him? My pastor is

also from South Africa, and he is one of the reasons I chose to

attend the church that I do. I absolutely adore him, and he always

gives us such good stories about growing up in South Africa! He is

about 58 or 59, so a bit older than me (I am 53, and in denial all

the way!).

I would love to visit your country someday. I live in the Pacific

Northwest--near Seattle, and work in downtown Seattle as a medical

transcriptionist.

This group has gotten me through some tough times--I lurk a lot but

occasionally feel the need to pop in with a word or two about

something. You will get a lot of support and find a lot of love and

friendship here.

Welcome, I am sorry for your diagnosis, but it is one of the better

ones to have these days, right? At least we have some effective

treatment without too awful side-effects.

Best of health to you,

Vicki

>

> Well thanks to all you wonderful folk out there fot the warm

welcome

> into your ranks.

> Yes, it's a group we would prefer not to belong to, but we do!

> At the moment I am waiting for the results of my PCR tests that

were

> done about 2 weeks ago. It's a bit of a nail biting affair as my

> January tests revealed a small return of ph+ cells, although the

> amount was small(0.0004) This was a bit of a blow as I was

> undectectable for about 2 years.

> I am sure I'll work this one off easily.

>

> In South Africa the drug of choice is Gleevec(yes spelled

differently

> to Gleevic)

> The other drugs like Sprycel and Dasitinib are still on trial here

as

> far as I know.

>

> The drug is very expensive here, and those who arn't on Medical Aid,

> (Medical insurance) usually receive it free through a local

> foundation.

>

> We also have to pay for our PCR, Blood counts and liver function

> tests.(every 3 months)

>

> My main side effect is odema of the eyelids, but this usually

> subsides as the day progresses.

>

> You guys sre very fortunate in having such wonderful treatment

> facilities in the USA and Canada. As far as I know no research is

> conducted in South Africa on CML, as we are a small group in total.

>

> Well that enough for now as it's 1h10 in the morning, and I had

> better get to bed.

>

> BTW. My Skype address is basil.jacobs, but watch the time zones. I

> think we are about 6 hours ahead of you Eastern Time.

> Best wishes to all

> Basil

>

April 30, 2008

Thanks Vicki,

Yes South Africa is a really beautiful country, with varied geographical

features.

Unfortunately with the current Government we are experiencing an unprecedented

wave of crime, which places a massive damper on the future - But we pray for a

change - and that we do not head the way Zimbabwe went.

Unfortunately with the advent of democracy, our new government has not had the

management skills necessary to govern. We have experienced a downward trend in

virtually all sectors. Viz. Hospitals, Education, Roads, Electricity supply,

Telecommunications etc.

Unfortunately this uncertainty has resulted in hundreds of thousands of citizens

emigrating, mainly to Australia, New Zealand, UK, USA and Canada. Our much

needed skills have therefore been depleted.

Yes ny Clegg is still popular in SA and also has a strong following in

Europe.

Tell your Pastor I send greetings and love from South Africa.

Till next time

Basil

[ ] Re: Thanks for the warm welcome!

Welcome Basil,

I am someone who has had CML since 09/06. I have been in molecular

remission since about September, '07. I tend not to think about it as

much as possible! On Gleevec 600 mg since April, 2007.

I love South Africa--my obsession musically was a South African

musician named ny Clegg. Have you heard of him? My pastor is

also from South Africa, and he is one of the reasons I chose to

attend the church that I do. I absolutely adore him, and he always

gives us such good stories about growing up in South Africa! He is

about 58 or 59, so a bit older than me (I am 53, and in denial all

the way!).

I would love to visit your country someday. I live in the Pacific

Northwest--near Seattle, and work in downtown Seattle as a medical

transcriptionist.

This group has gotten me through some tough times--I lurk a lot but

occasionally feel the need to pop in with a word or two about

something. You will get a lot of support and find a lot of love and

friendship here.

Welcome, I am sorry for your diagnosis, but it is one of the better

ones to have these days, right? At least we have some effective

treatment without too awful side-effects.

Best of health to you,

Vicki

>

> Well thanks to all you wonderful folk out there fot the warm

welcome

> into your ranks.

> Yes, it's a group we would prefer not to belong to, but we do!

> At the moment I am waiting for the results of my PCR tests that

were

> done about 2 weeks ago. It's a bit of a nail biting affair as my

> January tests revealed a small return of ph+ cells, although the

> amount was small(0.0004) This was a bit of a blow as I was

> undectectable for about 2 years.

> I am sure I'll work this one off easily.

>

> In South Africa the drug of choice is Gleevec(yes spelled

differently

> to Gleevic)

> The other drugs like Sprycel and Dasitinib are still on trial here

as

> far as I know.

>

> The drug is very expensive here, and those who arn't on Medical Aid,

> (Medical insurance) usually receive it free through a local

> foundation.

>

> We also have to pay for our PCR, Blood counts and liver function

> tests.(every 3 months)

>

> My main side effect is odema of the eyelids, but this usually

> subsides as the day progresses.

>

> You guys sre very fortunate in having such wonderful treatment

> facilities in the USA and Canada. As far as I know no research is

> conducted in South Africa on CML, as we are a small group in total.

>

> Well that enough for now as it's 1h10 in the morning, and I had

> better get to bed.

>

> BTW. My Skype address is basil.jacobs, but watch the time zones. I

> think we are about 6 hours ahead of you Eastern Time.

> Best wishes to all

> Basil

>

May 1, 2008

Hi Basil,

Thanks so much for the interesting post--I had no idea things were so

troubled in South Africa these days. It is mainly publicized here as

a tourist destination, and a wonderful one! Great beaches, wonderful

safaris, lovely cities, but of course, they don't publicize the crime

or deterioration of government services. Do you think that these

things will get better with time? Or do you feel that continued

deterioration is the fate of South Africa. I guess I have mixed

feelings--if we get the benefit of your people emigrating to the US,

we are lucky, but I would hate to think democracy is such a failure

and that there is no hope for improvement with time and experience.

I think you are right--it would be nice if the experienced government

workers could work alongside the newbies until the benefits of their

experience was passed along? I feel strongly about this too, because

I have done my job for 35 years now, and while I may not be as speedy

as some of the young transcriptionists, I have a lot to offer in

terms of experience and " tricks of the trade " that make the job flow

smoothly and evenly...I suspect it is the same in every area--

experience is what generates improvement...

Well, thanks again for the nice post--I was very interested to hear

about things. Glad to know ny Clegg is still around--he has been

very scarce in the USA, especially Seattle area. We haven't seen him

on tour for years now. Love his music.

Best of health to you,

Vicki

I have read the books about Botswana, " The Ladies #1 Detective

Agency " series, and so much enjoyed the descriptions of the land, the

people, the customs--are you familiar with those books?

> >

> > Well thanks to all you wonderful folk out there fot the warm

> welcome

> > into your ranks.

> > Yes, it's a group we would prefer not to belong to, but we do!

> > At the moment I am waiting for the results of my PCR tests that

> were

> > done about 2 weeks ago. It's a bit of a nail biting affair as

my

> > January tests revealed a small return of ph+ cells, although

the

> > amount was small(0.0004) This was a bit of a blow as I was

> > undectectable for about 2 years.

> > I am sure I'll work this one off easily.

> >

> > In South Africa the drug of choice is Gleevec(yes spelled

> differently

> > to Gleevic)

> > The other drugs like Sprycel and Dasitinib are still on trial

here

> as

> > far as I know.

> >

> > The drug is very expensive here, and those who arn't on Medical

Aid,

> > (Medical insurance) usually receive it free through a local

> > foundation.

> >

> > We also have to pay for our PCR, Blood counts and liver

function

> > tests.(every 3 months)

> >

> > My main side effect is odema of the eyelids, but this usually

> > subsides as the day progresses.

> >

> > You guys sre very fortunate in having such wonderful treatment

> > facilities in the USA and Canada. As far as I know no research

is

> > conducted in South Africa on CML, as we are a small group in

total.

> >

> > Well that enough for now as it's 1h10 in the morning, and I had

> > better get to bed.

> >

> > BTW. My Skype address is basil.jacobs, but watch the time

zones. I

> > think we are about 6 hours ahead of you Eastern Time.

> > Best wishes to all

> > Basil

> >

>

May 2, 2008

Hello again Vicki,

I did not really mean to sound so alarmist, but often perceptions are not what

constitutes reality.

We do have a beautiful country and one worth seeing as a tourist, but I believe

potential tourists should be aware of realities.

But then I guess Miami in Florida may be just as dangerous as here.

Yes transformation is great, but the reality of it is that is must be properly

controlled to be sucessful.

Our prayers is that sanity prevails.

Thank you for your concern.

Kindest regards