New Member

[Guest guest]

Bridget,

welcome to the list. I hope your little ones get over the virus you

mentioned on cystic-l soon.

Yep, my two with CF seem to pass those viruses between them too. Though they

probably catch them from older sibs in the first place...we never see any

symptoms in the older kids to warn us.

Take care,

Jen

[Guest guest]

Hello! My name is Jean. Usually just lurk, single mom to 2 kids-Dakota (8

almost 9) no CF and Maggie (3.5 years) with CF. Also work full time as a RN

and getting ready to start school full time in Jan. So, lurking is all I

manage to get done.

Just a quick question to Grandma Bev......Where in NC does your granddaughter

live? We live in Asheville (in the Western part of the state) and go to

CF clinic at UNC-Chapel Hill.

Has anyone out there had any problems with their little girls or little boys

with CF having recurrent Urinary Tract Infections and urinary reflux from the

bladder to the kidneys? Had a Urologist try to tell me it was related to the

CF. NOT! Maggie has UTI's all the time.

CF wise she does well except for the spring. We usually spend 1-2

hospitalizations and IV antibiotics for a month or two. So far, she has not

cultured anything from her bronchs except H. Flu (that was just this past

spring). Her height and weight are 50-75th percentile for her age! YEAH!

She seems to have more problems related to her Asthma. So meds are Flovent,

Pulmozyme (been on this since her diagnosis at age 6 months), pancrease MT 10

(when she decides she wants to take them), Claritin, Zantac, Reglan, ADEK

Vitamins, and Albuterol nebs as she needs them. This med list has gotten

much smaller only recently (she used to be on 15 meds a day, and most of them

2 and 3 times per day).

She does have a vest but I think it aggravates her kidney and back pain. She

is very active....sometimes too active for me. haha She does " exercise

therapy " bought a trampoline, uses it bunches in the summer. But now that

winter is coming on, she prefers Chest PT to the Vest.

I really appreciate to wonderful information and experience that everyone has

to offer.

Welcome to all the new people! Sorry that this list is needed, but I am glad

that it is here.

Love to all!

mom to Dakota, age 8, no CF but just finished his first book report in

3rd grade, and to Maggie, age 3 going on 30 with CF.

[Guest guest]

JoAnn.

Thanks alot, you know I really appreciate you holding my hand through the whole process of finding out (that took a week). Your words of encouragement helped me get through that incredibly stressful time. Thanks so much for just being here.

Dana

[Guest guest]

Dana,

Anytime sweetie! What are friends for? I hope you enjoy being part of the group.

Love & hugs,

Jo-Ann

P.S. You didn't have to wait to get pg to come over - lol!

Re: new member

JoAnn. Thanks alot, you know I really appreciate you holding my hand through the whole process of finding out (that took a week). Your words of encouragement helped me get through that incredibly stressful time. Thanks so much for just being here. Dana

[Guest guest]

Anise,

My first endo (I am now on my third one) told me

removing the thyroid is the surest solution to getting

rid of any and all symptons including thyroid eye disease.

I'm just not sure so I chose the ATD route to see what

results I get.

You'll find information here to help you.

--

dx hyperT/Graves Feb 2001; (treatment Toprol Xl and PTU)

[Guest guest]

Anise,

Shomon has a web site with a section in fertility and thyroid disease-I

don't ahve the URL, but if you check out Shomon on some search engine,

you should find it.

From what I understand, removing the thyroid does not necessarily eliminate

the antibodies in teh blood. I could be wrong, Elaine is the expert on

this. But I've been under the impression that the basic immune dysfunctions

(all of which I don't think we know) which cause Graves and may make us

suspectible to the other related autoimmune diseases continue to exist

regardless of whether or not we have thyroids.

There's been a lot of testimonials that conception is more difficult

post-RAI, although you won't find anything in the medical literature to

support that. One of the facilitators from teh NGDF BB (Jake if you read

that ) even mentioned that it appeared from the group posted that people had

more trouble conceiving post-RAI than others. However, many people have had

babies post-RAI too. I think the RAI issue is that it does work for some

people, but for a significant group the treatment causes many many problems

and you just don't know which camp you'll fall into.

My ob/gyn recommended removing my thyroid if I wanted to become pregnant

again because hypothyroidism is relatively " easy " to treat. Now, that's

subject to debate, as many of us who are hypo know that sub-clinical

hypothyroidism is an enormous problem becuse many endos do not treat their

hypothyroid patients sufficiently. If you do remove your thyroid, you must

read Shomon's Living Well With Hypothyroidism, in which she gives

specific examples of pregnancies that were well managed and what range the

TSH should be in during pregnancy, etc.

The other option, that I would try, would be to get on PTU, stabilize your

thyroid that way, and then try to conceive after a few months to a year.

PTU does carry its own risks but to me, it is less risky than rendering

you--the mother who will have to take care of that kid (s) for the next

twenty years--permanently hypothyroid if you can help it at all.

Keep perusing the old messages here, you'll fine a lot more information on

this issue.

B

new member

> hi, I am trying to find out about how this disease works and what my

options

> are and I feel awful and cant think straight, as I am sure many of you

> understand.I have read through a lot of the archives and found someanswers

> to some of my questions. We put off having our family while I did the

career

> tthing, miscarried and now find I have Graves. I have figured that first I

> have to get my hyperthyroidism under control, and then a choice between

> getting stable on the safest drug for pregnancy, or having RAI and wait

> ing6months at least before trying to have a baby, or having my thyroid

> removed and getting stable. But I can't find out how the Graves will

affect

> conception and pregnancy in each of these 3 treatment choices. I am hoping

> some of the people in this group could tell me.

>

> In Elaine's message 3805, she says that the TSI antibodies that cause

Graves

> Disease originate in the Thyroid. It sounds as though removing the thyroid

> should get rid of the antibodies and cure the Graves disease. But I can't

> believe the answer is so simple. Or ithere some other catch?

> thank you

>

> Anise

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

>

[Guest guest]

Hi ,

Sorry about that. Yesterday was my 14 hour work day and 2 hour commute, and I

was typing fast. I was answering Anise's post without mentioning the specific

question. I should have said that the average duration for remission using

ATD's is 6 mo to 1 year, although some people achieve remission after several

weeks and for some people, it takes many years.

As for the length of time one can have Graves' disease, some conditions

spontaneously resolve (with no medical intervention) within a few weeks,

while some persist for years. Since most people are treated with conventional

medicine today, it's hard to find good current studies on this. It is known

though that people with mild symptoms and low antibody titers generally

achieve spontaneous remission at the rate of 10% to 25% annually. Have a

good day, E

[Guest guest]

,

I think Dr. G. told you, same as B's Mayo clinic consultant told her,

that autoimmune thyroid disease can be a cyclical event, with patients moving

from autoimmune hypothyroidism (Hashimoto's) to autoimmune hyperthyroidism

(Graves) and even Hashitoxicosis, at different times in their lifetime.

Generally, hypoT is first, but you can always move to hyper and back to hypo,

depending on what type of TSH receptor Ab is predominating. And in between

you can have periods of remission, with no antibodies. Or you can just be

hypothyroid with transient sporadic periods of hyperthyroidism. I think the

end result is to confuse us.

[Guest guest]

Just to follow up on Elaine's comments (below): I try to keep in mind what

my acupuncturist told me: to consider my thyroid as out of balance and

think in terms of balance as much as a particular disease. IN my three

years of having Graves/Hashimotos, I bounced from hyper to hypo over the

course of one year, with that year in between being one of relative good

heatlh. I fully anticipate a life on a thyroid roller coaster and try to

think in terms of making the climbs and drops as moderate as possible, and

to see them coming in advance. At the Mayo Clinic, I was told that it is

much more common than people know for people with one particular thyroid

disease to swing from one illness to the next and back again. The doc

speculated that some day there would be no distinction between

Graves/Hashimotos because they are basically aspects of the same spectrum of

dysfunction.

B

> ,

> I think Dr. G. told you, same as B's Mayo clinic consultant told her,

> that autoimmune thyroid disease can be a cyclical event, with patients

moving

> from autoimmune hypothyroidism (Hashimoto's) to autoimmune hyperthyroidism

> (Graves) and even Hashitoxicosis, at different times in their lifetime.

> Generally, hypoT is first, but you can always move to hyper and back to

hypo,

> depending on what type of TSH receptor Ab is predominating. And in between

> you can have periods of remission, with no antibodies. Or you can just be

> hypothyroid with transient sporadic periods of hyperthyroidism. I think

the

> end result is to confuse us.

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

>

>

[Guest guest]

Welcome, Adell! Has the hema come up with a treatment plan yet?

I hope that you'll start feeling better once they start doing

something for you.

I'm old enough to know better, young enough to go ahead and do it

anyway. I've got asthma, allergies, SLE, AIN, osteo- and

rheumatoid arthritis, PCOS, and APLAS . . . actually, I think my

body's just trying to implode. ;> I'm married to the world's

most wonderful man, , and have two wards, Jessie -- who

just got married -- and Lexa. Oh, and a whole herd of furbabies;

two Borzois, Pippin and Elf, two Whippets, Lleodhais and Silver.

Owens

==============

Quick intro - I'm 31, married, have a 4 year old daughter, and

live in Indiana.

My family doctor sent me to a hematologist/oncologist after my

WBC count kept coming

back low, but I've been " sick " for several years now...just the

general achiness, feverish,

always tired, short of breath, no energy kind of thing, plus hair

loss, and skin problems that

the dermatologists have never been able to clear up. And in the

past year or so I've had

more specific symptoms crop up, like lumps on my shins, heart

problems, raynauds, etc.

The hematologist went over my medical history and ordered 23

blood tests and a chest

x-ray series. I went back last week to get the results and was

diagnosed with Mixed

Connective Tissue Disease.

I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to

automimmune diseases, but

I've found that being a sick mom is much tougher than being a

sick kid who has a mom to

take care of her.

Adell

[Guest guest]

Welcome, Adell! Has the hema come up with a treatment plan yet?

I hope that you'll start feeling better once they start doing

something for you.

I'm old enough to know better, young enough to go ahead and do it

anyway. I've got asthma, allergies, SLE, AIN, osteo- and

rheumatoid arthritis, PCOS, and APLAS . . . actually, I think my

body's just trying to implode. ;> I'm married to the world's

most wonderful man, , and have two wards, Jessie -- who

just got married -- and Lexa. Oh, and a whole herd of furbabies;

two Borzois, Pippin and Elf, two Whippets, Lleodhais and Silver.

Owens

==============

Quick intro - I'm 31, married, have a 4 year old daughter, and

live in Indiana.

My family doctor sent me to a hematologist/oncologist after my

WBC count kept coming

back low, but I've been " sick " for several years now...just the

general achiness, feverish,

always tired, short of breath, no energy kind of thing, plus hair

loss, and skin problems that

the dermatologists have never been able to clear up. And in the

past year or so I've had

more specific symptoms crop up, like lumps on my shins, heart

problems, raynauds, etc.

The hematologist went over my medical history and ordered 23

blood tests and a chest

x-ray series. I went back last week to get the results and was

diagnosed with Mixed

Connective Tissue Disease.

I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to

automimmune diseases, but

I've found that being a sick mom is much tougher than being a

sick kid who has a mom to

take care of her.

Adell

[Guest guest]

Welcome! I'm Shirley. I have MS, crohns disease, IR, PCOS, FMS, pernicious anemia, and other "little things".

Shirley

co-moderator

-- new member

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Adell, Hey another Hoosier! I live on the westside of Indy. Sorry about the MCTD dx. What are they doing for you?

To Christy, doesn't Hamilton have MCTD? If so we need her to get her butt back in gear on this list so she can talk to Adell.

Again, Welcome Adell!

Shirley

-- Re: new member

Hi . Thanks for the welcome.

Quick intro - I'm 31, married, have a 4 year old daughter, and live in Indiana.

My family doctor sent me to a hematologist/oncologist after my WBC count kept coming back low, but I've been "sick" for several years now...just the general achiness, feverish, always tired, short of breath, no energy kind of thing, plus hair loss, and skin problems that the dermatologists have never been able to clear up. And in the past year or so I've had more specific symptoms crop up, like lumps on my shins, heart problems, raynauds, etc. The hematologist went over my medical history and ordered 23 blood tests and a chest x-ray series. I went back last week to get the results and was diagnosed with Mixed Connective Tissue Disease.I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to automimmune diseases, but I've found that being a sick mom is much tougher than being a sick kid who has a mom to take care of her.

Adell

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Yep. I talked to her a few weeks ago and everyone was fine and the kids are keeping her really busy along with work. She was getting tired a lot but otherwise ok.

Re: new member

Hi . Thanks for the welcome.

Quick intro - I'm 31, married, have a 4 year old daughter, and live in Indiana.

My family doctor sent me to a hematologist/oncologist after my WBC count kept coming back low, but I've been "sick" for several years now...just the general achiness, feverish, always tired, short of breath, no energy kind of thing, plus hair loss, and skin problems that the dermatologists have never been able to clear up. And in the past year or so I've had more specific symptoms crop up, like lumps on my shins, heart problems, raynauds, etc. The hematologist went over my medical history and ordered 23 blood tests and a chest x-ray series. I went back last week to get the results and was diagnosed with Mixed Connective Tissue Disease.I had Juvenile Rheumatoid Arthritis as a kid, so I'm not new to automimmune diseases, but I've found that being a sick mom is much tougher than being a sick kid who has a mom to take care of her.

Adell

Welcome, adell@.... Tell us a little about yourself. I'm ; I have Crohn's Disease & all the stuff that goes with it. Right now, I'm having problems from tapering off prednisone; but the Remicade & 6-MP seem to be working for the Crohn's.

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Thanks for the warm welcome, everyone.

Sorry it's taken me so long to respond, it's been a crazy week here.

I haven't been started on a treatment plan yet. My first appt with the rheumatologist is Dec 4, so things are sort of on hold for a couple more months.

Shirley - It looks like we might be neighbors! I live on the westside as well, in Brownsburg.

Adell

[Guest guest]

Around here that's a very short time for a good rheumy.

family practice is quick but the specialties are a long time--unless it's an emergency.

Kathy

Re: new member

Thanks for the warm welcome, everyone.

Sorry it's taken me so long to respond, it's been a crazy week here.

I haven't been started on a treatment plan yet. My first appt with the rheumatologist is Dec 4, so things are sort of on hold for a couple more months.

Shirley - It looks like we might be neighbors! I live on the westside as well, in Brownsburg.

Adell

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Kathy, Hand-foot syndrome is caused by the chemo drug Xeloda (pronounced

zeloda), I have been on 2000mgs of xeloda /day for 2 cycles of 2 weeks on one

week

off. There is some belief that the arthritis pain med " celebrex " helps

control the side affect. I am also on 800 mgs of celebrex daily and have had no

hand-foot syndrome. Do you know what chemo drugs your husband is on? I was dx

12-2002 with mets to the liver. I am 44 yrs old. I have learned some hard

lessons

today after my fist visit with a cancer center dr at University of Miami. His

opinion looking at the scans is that I should have had a liver re-section 5-6

months ago and now it may be to late if this chemo I am on does not work. I

would strongly advise you to push to get your husband into a university cancer

center if he is not already getting care from one. I have realized that the

private oncologist I have been seeing has been keeping information from me that

could have encouraged me to get more aggressive myself with my care. You and

your husband have to take control of his care. Get more opinions! If he is on

cpt-11 that drug would make me jaundiced for a day or so after my treatments.

Stick with this group and don't be afraid to ask any questions. I have learned

more from this group in a short time than I have from my oncologist in 10

months of treatment. I just can't say enough in words to complement the people

in

this group. They will help you! I hope your husband feels better. Dale M

[Guest guest]

> : I am not familiar with your symptoms but i read a post

where someone

> had a similar problem and it sort of wore off. Seems she had an

alergic

> reaction.

I hope it goes away. It is better since I posted.

> Who

> told you that it was terminal and how are your blood panel

readings.?

I was told it was terminal by onc once it mets to lung. Doctor says

my blood looks good last time checked. It's checked about every 3

months. My CEA never changed with original dx, so they don't use

that as an indicator.

>I would

> seek

> a second opinion. Where do you live? Any major Cancer Center or

University

> associated hospital?

I live in Colorado Springs. I don't think there is a big place near

here. I don't have insurance, and little money, so I am pretty

limited. I go to Rocky Mountain Cancer Center.

> You should not have to suffer the pain you are feeling.

> This

> is the miracle season,lets hope all the prayers on the board will

help you

> find your miracle. We will start right now,peace and hope. Have

faith so many

> people here

> have survived that someone may be able to answer you. Hugs and God

Bless

> Nick & Jane

Thank you so much Nick and Jane. I feel lucky cause they say my

cancer is not there right now. I just don't feel good. It sure

could be a lot worse I know. I would like to send peace and hope

out to everyone. My prayers are with everyone.

[Guest guest]

> , I'm sorry to hear of your situation. Especially that it

appeared you

> might have been out of the woods! That's how this nasty disease

seems to work.

I totally agree with you there.

> i was Dx 12-2002 as stage IV with mets to the liver. I also

experienced the

> lack of concentration and forgetfulness while on 5fu,leucocarin

and cpt11.

Oh, I said so much backwards and everything during the chemo. My

family laughed so much. :-) I had cold sensivity during those

treatments too. I still have cold sensitivity I am finding out. I

also was doing alot of throwing up in the last cycle of treatment.

During and after the treatment. It was horrible.

>by

> the way i'm only 44 yrs old. In Oct. I started a drug called

Oxaliplatin by IV

> thru a port implant in my chest and Xeloda(a pill). The side-

effects are very

> minor for me campared to the cpt11. I have cold-sensitivity for a

few days.

> Some patients have numb fingers and/or feet also. I havn't

experienced that

> problem yet after 6 treatments. Has your oncologist mentioned

these drugs to you?

I have been told I am in remission (I guess that is the word). THey

said there is no indication of cancer. My CEA never showed cc, so

that doesn't tell them anything. The cat scans and x-rays are

clear. That's about it. So they don't plan on treating me any

further unless I guess my blood tests show it again or scans.

Sounds kind of out there to me after reading so many messages on

this loop. Since I still am having so many problems, I feel like I

am still having the cc. I don't understand. I am thinking the

chemo leaves me with after affects-this is after not quite a year

after finishing chemo. By the way, I had 5fu-leuc-cpt11 through

first a groshung then when it came out a pic line. I liked the pic

line better myself. I never had radiation cause they said they got

all of the tumor both times.

> Dale M.

Thanks for replying Dale! God bless!

>

>

>

[Guest guest]

My husband was also Stage 1 and before his surgery he had 6weeks of

chemo and radiation.

They took 24 lymph nodes and all were clean and he was told he was

cured. asked his " previous " Onc about follow up chemo after

the surgery just to make sure nothing was floating around. The

previous Oncologist said there was no need. One year later it

showed it's ugly head in the lung. We changed Oncologist and are

now fighting stage 4. No one will say one way or another if not

taking chemo after his first surgery would have prevented the

reoccurance so I can not honestly say what to do. If had it

to do again, he said he would have insisted on follow up chemo and

then we could have at least known that we did all we could.

Merry Christmas,

Joyce

> Helo everyone, I had colon cancer surgery July2003 after biopsy my

> oncology told me that Stage I type of cancer and said that no

> medicine/chemo need to take?. Does anyone know what step/test

should

> I have? thanks,

[Guest guest]

Hi ;

Welcome to the group, although I wish your Dad's health problems did

not have to bring you hear! I am very, very sorry to hear about your

Dad's health. I am sure that his doctor(s) would be able to give the

best advice to you on suitable sleep medications, recognizing that

your Dad probably has an impaired liver due to PSC. Presumably they

won't discharge him from the hospital until he has stopped vomiting,

and would probably only give him medications that would not trigger

recurrence of vomiting or cause further liver problems. I trust that

his doctors will be able to stabilize him soon. Has your Dad been

listed for a liver transplant?

Best regards,

Dave

[Guest guest]

Good morning,

I recently joined the group this week. I have had UC for about 12 years and developed PSC 2 years ago. Recently, I was in the hospital twice for an infection which caused my liver function levels to rise. I was placed on the list for a transplant just in case. I'm a 33 yr old, vice president of a bank in Houston, TX. I hope to gain more understanding and I hope to help others who may have the same problems. I thought that I was alone but I realize there are wonderful people that have the same thing as me, offering me great support.

Larry B.

[Guest guest]

Hello ,

You've gotten a warm greeting from some of the Canadians on the list, so welcome

from a fellow t1 from the states (Pennsylvania to be specific). I was diagnosed

at age 11, and I am now 52. I lost my sight almost 20 years ago. You're on the

right track since you expressed a desire to count carbs. Do you check your bg

frequently? This is one thing that some diabetics fail to do. I happen to

check around 8 times per day, which used to be thought of as extreme, but is

finally now becoming more the norm I believe.

Dave

new member

Hello , my name is . I am 46 yrs old, type one since 8 yr old. I was a

pump

user and am now just starting on Lantis and novo-rapid.

I lost my sight 18 yrs ago. I am a guide dog user living in a small town in

Ontario,

Canada.

I am trying to learn how to count my carbohydrates and calculate my insulin

dosages.

As an aside I also have a wheat allergy so my diet is a limited menu. (frown)

I hope to learn a lot of tricks and solutions for managing my diabetes from

this list.

I welcome any questions about myself. Thanks.